The Truth About Being Blind & Facing A Medical Emergency… (emotional)

[@MollyBurkeOfficial]

I forgot to mention this but my boyfriend is all good now so don't worry! haha This video is hard to post , as these raw and vulnerable ones always are, but I hope it helps at least one person out there feel less alone. Being disabled is not easy and the grief around that presents itself at unexpected times. I'm a deep feeler and someone who cares immensely for my loved ones and it's difficult to feel that I can't be the care taker to them that I want to be sometimes. All I can do is forgive myself and focus on what I CAN do and the value in which I do add to their lives. I'll add that, in circumstances like when my mom had a fall in Italy a number of years ago and had facial bleeding, requiring an ambulance ride and hospital visit, it's also very difficult not being able to actually SEE what's going on. It's hard being in an unfamiliar environment and unable to look around to go for help, unable to see how severe the wound is, etc. and for me, this can lead to a lot of panic and feelings of helplessness, which is very difficult. There are many more layers to the challenge of dealing with emergencies when you're blind that I could have touched on but I was caught up in the emotions I was feeling while filming and got side tracted but anyways... I'll leave it there for now! Thanks for the love, empathy, and compassion you always show me when I post content like this!

[@laurenschenck5355]

I am so glad your boyfriend is better LUV U Molly ❤

[@judithlashbrook4684]

For context, I'm not blind but have many other disabilities. 100% yes, be angry, upset, frustrated, feel the feelings! I think you mentioned the things that have helped me in this sort of circumstances but it doesn't sound like you're giving yourself anywhere near enough credit for it: 1: you know that you would have found a way to get him care, this time it was your mum, it could have been phoning friends, it could have been getting a KZbin doctor on the phone, it would have been whatever it took to make sure that he was taken care of! He can count on you in an emergency! 2: you used your talents to be of service, ok filling out forms at the ER isn't your strength, however you where able to let others do that so you could make best use of your talents.. research, putting your network to use.. and so many other things that you didn't mention... It bothers me greatly that generally in society seems like it is only ever the "big" things that get noticed and praised while the seemingly more subtle, mundane everyday things get taken for granted...

[@kimmacdonald7527]

❤ I'm so glad he's feeling better. Thanks for sharing Molly.

[@nicolesamazingvacations5064]

Molly I know that feeling all so well as a legally blind mom.

[@AJDudz12]

I had a thought. I remembered the ...apps? Programs? I know there's a thing that lets you call a call center that uses your phone camera or special glasses so the person on the phone can be your eyes. Members in my family have used it when they got turned around while out and about and even to help them find missing objects. I wonder if having this would be a comfort to you. A kind of emergency human eyes to be able to describe things that would enable you to make certain decisions in emergency situations. I know I've found it very helpful to have certain adaptive things even if they are rarely used because it helps remove that helpless feeling/occurrence

[@SolElarien]

I’m a doctor and the most important thing for patients is to know that you care for them, sometimes you can help, sometimes you can’t (and that’s very frustrating for a doctor) but being loving and kind and someone they can trust when they want to know something, even if it’s bad news, it means a lot. Don’t feel like a burden, you care, that’s what really matters.

[@no-one.in.particular]

As a disabled person that was a regular at emergency departments/hospital for years, I second this. Literally just knowing someone cares is huge, I always went to hospital alone and cared for myself and others as soon as I got out. There's a variety of medical specialists and support workers for a reason, caring for someone who is unwell is a skill that people spend years training for.

[@butterflygoddess2132]

I totally feel you in this video as a blind mom I have felt very similarly when there has been an emergency with my son and I’ve had to take him to the emergency room and try to support him the best that I can I don’t want to just leave him to my parents or somebody else to take care of because he’s my son so I feel like I really need to be there for him so my advice is probably very simple but in a situation where I need to find a bathroom and I don’t have anybody else to help me get to one I will take my cane and ask a medical provider and you know a nurse or a person behind the desk or somebody ask them if they can direct me to a bathroom sometimes people will take me to it like literally walk me there and sometimes they will give me directions so that I can get there but I find if I explain to people Blind and I can’t see and I need help finding a drink of water or a bathroom or something for my son. People are very willing to help and so most people will try to help you out if you asked for it and maybe that takes away a little bit from the person that’s having the medical emergency but I think if you’re not directly speaking to somebody on their team, that’s taking care of them and you’re asking you know a different medical staff, then you’re really not taking away from them and you’re still able to do something for yourself independently and still be there for the person that you love so that would be my advice it’s kind of simple, but I totally know how you feel and that feeling of being a burden when you can’t see, and you have these limitations, and the feeling of wanting to be a support to the people that you love and trying to figure out. When is it the right time to go in and be that support and when is it the right time to stay home and let other people support that don’t have the limitations that you have good luck to you, Molly I think you’re an amazing person and you deserve the best in life don’t be afraid of the future and getting married you will find happiness and you will find love and you will Always have struggles yes but there will be times that far outweigh the bad there will be some amazing times and it is so worth it so don’t ever give up you deserve the best

[@iSheree]

Well said! You’re a good doctor. I was born disabled and have developed many autoimmune diseases and chronic illnesses including cancer. My most recent visit to the ER was so frustrating. I was suffering from a new and sudden excruciating pain in the left side of my chest and they ruled out anything life threatening and had to send me home and let my doctor figure it out… the doctor in ER showed that he cared and was sorry that I was suffering so much but couldn’t help me. Even though he couldn’t help me, I appreciated that he cared. It meant so much. My new doctor is also amazing, she really does care about me and I am so lucky I found her before my cancer became terminal. She has saved my life. I have a good chance of fighting this cancer now because of her. Other doctors didn’t care and completely ignored my concerns about having cancer and other illnesses, calling me a hypochondriac. It just seems like I am because I am 32 years old with a huge list of symptoms and problems. Unfortunately I actually do have cancer and other illnesses that my new doctor has diagnosed me with in the past year because she LISTENED and CARED. A good doctor makes all the difference. ❤

[@emilyb5557]

Same, I'm a doctor and have disabilities myself. Having disabled doctors and other health care works helps us to be on both sides and to advocate for and instill more empathy and inclusion in medicine. The biggest thing is kindness and showing you care. I often don't have an answer but I try to find one and find out what's important to the patient and their family - it might not be what I would assume. I'm going to save video and come back to watch when I have proper time to concentrate. Hopefully can learn ways to be a better doc for people with VI or loved one of patient.who has VI.

[@toniajeen]

I agree. the best thing a doctor (or anyone else for that matter) can do is to listen (and care).@@iSheree

[@Radaret04]

A quick Google search showed that the Canadian Red Cross is working on offering CPR/First Aid courses for the disability community. Perhaps you could look into taking a course. Having the training in what to do in an emergency might lessen your anxiety. Also having a folder with hard copies of insurance, ID, medical history, medications, allergies, etc that you can give to a medical provider is helpful.

[@shalacarter6658]

This scares me because I can no longer kneel. I would have to do it in an emergency, but I would not be able to do it as well.

[@Radaret04]

@@shalacarter6658 I hear you. I used to be an EMT, but my back, knees and shoulders are wrecked from it. I could do CPR in a pinch but it would take forever for me to physically recover from it.

[@anainesgonzalez8868]

This is such a good advice! I love that

[@lburton874]

Basic first aid classes should be an option for everyone. A course targeted for a Disabled person requires adjustments. Personally I believe they should be a requirement of high school graduation. The best first aid class I took covered how to help myself if I’m bleeding or choking.

[@Radaret04]

@@lburton874 Agreed basic first aid should be a core class along with swimming proficiency. With the rise of school violence in the USA, bleeding control training is essential.

[@williamquinn7768]

Molly, I was an EMT for 12 years and I saved lives, lost many more lives, the only comfort you have is knowing that you did what you could for someone. It never had to be a major thing holding a hand telling someone your gonna be right by their side no matter what is what really matters. Molly your not inadequate in any way, just do what you can for them

[@spoonlessvalkyrie7514]

I’m disabled due to autoimmune diseases. When you talked about feeling like a burden that is so REAL! No matter how much someone tells you that you aren’t you still feel it! I had to take care of my parents before they died of cancer 6 months apart. It was the biggest struggle I’ve been through in my life. I fell a few times trying to help them and generally went into a state of unwell. They finally gave me permission to bring in hospice and it was such a relief. I wouldn’t do it differently but boy was it challenging!

[@RubyGeeScuderia]

Oh my gosh I relate to this! My mother had cancer and shortly after starting treatment I got really sick with my functional neurological disorder. I was her primary care the whole time and there were so many times I couldn't stand or carry things etc.

[@oldasyouromens]

Molly, as a chronically sick person, having someone focused on our comfort - there to make a cup of tea, there to help ring family, there to make sure we have food in the fridge that isn't totally unappetizing - is CONSTANTLY overlooked. And you know your limitations, and that is totally okay! You have the ability to focus on things to help the sick person that other people cannot and do not. Other people stepping up is great, let them do that. You can focus on what you can do. And as your relationship develops with people who need help in your life, you will figure out what you can do to help, and you will have a procedure, and you will be able to enact it quicker and easier, and be less anxious.

[@MollyBurkeOfficial]

This honestly brought tears to my eyes.

[@oldasyouromens]

@@MollyBurkeOfficial you're so welcome! And you know what? The people in your life like your mom who have to step up in these situations are grateful you're there to focus on the little things. Usually, we come home from the hospital tired and angry it took so long and relieved and in pain, and the able bodied assistant still has to do more work! Coming home to realize the food I want is in the fridge, my friends and family are notified, medication delivery can be set up and my prescriptions scanned into the pharmacy app, and a cup of tea is on the table? That's everything I would have done upon getting home taken care of. That person can now, instead, SLEEP. WITHOUT WORRY. You don't know how much you help, and don't discount yourself!

[@ameliaacker6246]

I trained as an EMT so I feel ready to respond to emergencies, but I know eventually I won't be able to treat the patient to the standard of practice due to my disability. Though I can now, it makes me frustrated and sad that I'll have to stop helping people in that way. You aren't alone

[@MollyBurkeOfficial]

Ah, this really hit me in the feels. Sending you so much love and thank you for the work you do!

[@mariannetfinches]

Thanks for doing such important work. Whenever you're no longer able to do it, you'll still have helped a helluva lot more people than most of us, many on the worst day of their lives. So thank you

[@cmkw]

I am also trained as an EMT and recently lost the ability to consistently and reliably treat patients to standard practice. It has been one of the most challenging things to go through, and I'm still going through it. I am shifting to training and consulting because I still have the knowledge, but my body can't always be relied on. Sharing the information and training so more people are prepared for emergencies is the way I am trying to work through this. This may be an option for you as well!

[@kerrynelson625]

A friend called those moments “grief bombs” and I thought that was so spot on. I had a sudden tragic loss last year and there have been a lot of grief bombs.

[@bunhelsingslegacy3549]

I call them "grief attacks", but yeah, same thing. Never know when they're going to hit. I lost my dad 22 years ago and they still hit.

[@ygbbg179]

I want to thank you for candor. I’m chronically ill with several invisible illnesses and this video touched my heart. It also made me know I’m not alone.

[@MollyBurkeOfficial]

Sending you hugs! We're in this together!

[@elizabethr.9359]

Same ❤

[@peggyknecht5551]

Same here. Sending you hugs and prayers.

[@cheryl-lynnmehring8606]

​@@MollyBurkeOfficialYou can feel helpless, grief, frustration, and inadequate that you can't help a loved one in an emergency situation even when you are sighted. These feelings are not just exclusive to the disabled community, but they are more intensified for them. You are not alone.💘

[@denisesells8667]

As a paramedic I have had to tell people that they need to not accompany their loved one. Most of the time it was because they would need a ride home or back to where they were staying. Once it was because the person was more of a hindrance than a help. I had the opportunity to have more difficulty with the loved one than the actual patient. I have also been on the other side where I had to accept that the situation was out of my control. Hugs to you.

[@AlizzaLuna]

I'm glad you're speaking about this. As a disabled person, a lot of it hits a little too close to home right now, so I'm gonna take a break and hopefully come back and finish the last 7 minutes when I have more mental energy. It really really sucks to feel like a burden to your loved ones, especially when all you want is to take care of them. I'm glad everyone is feeling better now, it's so scary when you don't know.

[@MollyBurkeOfficial]

Sending you love and hugs! Be gentle with yourself! XO

[@elanaregan7068]

I totally understand this! My dad was diagnosed with cancer this year and had to get very major surgery. I felt bad that because I am blind I made his recovery harder. He has a PIC line that he can’t fully operate on his own and he’ll ask me for help with preparing it for him to shower, and I feel that I slow down the process. I’ll drop the cords and not be able to find them and we’ll have to start all over again, and I feel like I’m making his life ( which is already really hard right now) even harder. I understand the feeling of being a burden in these medical situations. My best advice is to recognize what you can do. I could hold my dad’s hand when he was in pain, I hear in voice and breathing if the pain was getting worse. Sometimes you can feel in a persons pulse on their wrist that their pulse is beating very fast or that they are sweaty. Those can be non visual signs of pain. We have to recognize as disabled people that we can’t do everything, but that we are helpful. I know my dad loved having me there in the hospital with him and at home even if I was not as logistically and medically helpful as a sighted person may have been. Just know that you may feel like you are a burden, but you offered your boyfriend so much more then if he were alone. I sure he would rather have you there asking him questions, rather than be alone and in pain. From one blind girl to another I get it and you are not alone.❤

[@shalacarter6658]

Better to drop the lines and have to look for them than not to be there to do it at all! Blessings to you!

[@jude1515]

I agree that your father I am sure, appreciates your concern for him.❤️

[@iSheree]

I am disabled and I suffer from many medical emergencies. My partner, who has no disabilities, still feels helpless. It is a normal feeling, it may be more difficult for you but you are not alone. I also know what it feels like to feel like a burden, but people would not be around us if we were.

[@ashleycox432]

I'm also blind and have felt like this many, many times. It is absolute hell on earth. It's feelings of helplessness, worthlessness, inferiority, self-degradation, selfishness and selflessness, uncertainty, deep sadness, fear of the unknown and sometimes resentment all rolled into one. Just awful. I hope your partner is doing better now.

[@MollyBurkeOfficial]

ugh, YES to all of that! You're echoing exactly how I feel in those moments and it's hell.

[@amandafabres]

At the end of last year I fell and injured both my feet, for a while I had to use a wheelchair and went back to live with my mother until I recovered. It was extremely frustrating to no longer be able to walk freely, cook whatever I wanted, or simply take a shower alone. And this time made me reflect on how much I took my mobility for granted and how it actually isn't! Anyone can become disabled, and this thought allows us to have more empathy for others. I know it's not even close to what you face every day, but I wish you and your loved ones all the best Molly! kisses from Brasil

[@evalynn1863]

I think this is something too many able-bodied people don't understand and don't want to think about. Every single person is one bad day away from being disabled. All it takes is one day, one accident, one illness, and it can change your life forever.

[@ch1979or]

so true!!! i went from a fully functional human to full disability in less than 3 months. the mental toll is so severe. i went from snowboarding to having a prescription walker and full disability in such a short time. the burden we feel to our loved ones is crazy, and it has no end, because we never want to cause anyone else any discomfort

[@AL-bv7jt]

I too went from fully able bodied to having a disability. To add insult to injury, I once fell and broke one ankle and sprained the other. I already felt like a burden but that incident made me feel even worse. I try my hardest but I’ll never get back to where I was before my disease.😢

[@ShelbyDevaud]

Yep, same here. I went from livable chronic pain, to excruciating pain, unable to walk, or do anything other than lie down without extreme pain. Getting a wheelchair was such a life saver, I was so extremely grateful that I could move around again. As quickly as the pain worsened, in my memory, it just left one day. And slowly I was able to walk with a rigid corset as a back brace, then all on my own again. Unfortunately it’s likely to return again one day and half my leg is numb. I appreciate every moment. Some days I need crutches, rarely I need the wheelchair, but I’m so grateful for having legs that function. I’ll never take that for granted again. Being able to ice skate, run, walk, jump, carry my kid around, cook, etc.

[@MommingwithMigraine]

Even outside of emergency situations, not physically being able to be there for loved ones has been one of the hardest parts of my own neurological disabilities (my brain fluid is leaking, so i do a fun chronic daily migraine cycle that is disabling). I'm nowhere near the mom nor wife I dreamed of being, but damn have I learned to be graceful with myself and others. It looks like you have too, and you found ways you COULD support him in the moment. Kudos. These feelings/situations are valid and difficult. Thank you for sharing. You help me feel less alone, inspire me to stay positive when I'm not the same as others, and you were one of the original voices that gave me the courage to share my own story, too.

[@delaneyjordan4928]

I was definitely thinking about the experiences you've shared during this video! I'm so grateful there are compassionate corners of the Internet like this.

[@MommingwithMigraine]

@delaneyjordan4928 aww 🥹 likewise... I'm so thankful for new friends like you. I don't know all of your your faces but boy, do I feel your hearts when you write in!

[@maddystafford8236]

Hey Molly, it’s Madelyn your blind follower from Utah. This is something that I have experienced in the past few years myself. And I’ve never been able to put into words the trauma that we face during situations like this emotionally. I wish I had solutions too, but it just sadly is something we have to go through. And I’m happy to hear That you have such A supportive family that helped you through this. I am 29 and dating for the first time. And having a hard time with the blindness and visual impairment perspective. For reasons like this. So thank you for making me feel not alone.

[@kkrb1212]

Also in Utah!

[@stacyzanavich4451]

Feeling helpless in medical situations is so difficult. A couple months ago my husband was in a car accident. That was a day after I found out I had Covid. So, I'm a sitting duck at home feeling completely useless while I watch other people taking care of him. We are so thankful to have people who can step in when needed and I have no clue how he would have made it to all his appointments had we not. I had to put that aside and realize that me helping in that moment would have caused many more un-needed problems. Although my situation was temporary, I completely understand how you felt. From only having a followers perspective, you seem to have a strong support system. Them knowing how much you care and wanting to help is what matters. I'm sure your boyfriend was in great hands with your mom.

[@dibailey540]

Oh maannnn Molly! As a disabled parent I felt this in my soul. There have been times when my kids have been unwell and it has been better for my partner to take them to the doctor/ER because they are able to drive etc and it has broken my heart that I can't be there to comfort them even though I know he does a perfectly good job of it. My child had an emergency when my partner was overseas for work and I had to take them to the ER. While it was extremely stressful and exhausting for me due to my disability, I was grateful in that moment that I got to take them and comfort them. But it's a tough position to be in. Thankyou for sharing your story.

[@ambermhaley]

I am sighted so while I cannot perfectly relate to this experience, I can (and many others) can now empathize with you and others with disabilities better in such situations and be better able to help them out if they need!

[@itsrileylyn]

I feel this SO intensely as a wheelchair user. I think it is so emotionally intelligent and mature of you to know when to step back. I struggle with that, often creating more issues for everyone. I am learning from you. ❤️

[@JamieNicole729]

As someone that suffers from anxiety & ptsd I can understand your feelings of frustration towards limitations. Your feelings are valid & you aren’t alone in those thoughts.

[@amandas2168]

Even if you are sighted you still get into situations where you feel like you want to help but can't do it is hard no matter what you just want to help the people you love

[@MollyBurkeOfficial]

Yes, I try to remind myself of this! Some people are better at handling emergencies than others, disabled or not!

[@anainesgonzalez8868]

Exactly!

[@HaleyMary]

Exactly! During the pandemic in April 2020, my dad broke his tibia shoveling soil into a pail and a huge pile of soil fell on him, twisting his lower leg and breaking his tibia. As no-one besides him in the family drives, he drove himself first to his house thinking he could get the dirt off his leg, realized that wouldn't work, so he crawled back into his jeep and drove to the emergency room. It was also during the pandemic, so we couldn't even go over to visit at his house to help him out. He had a friend staying at his house at the time, so it wasn't like he was all alone thank goodness. Whenever I went on a bike ride, I asked him if there was anything I could get him, but he never asked for anything except for one time when it was pouring rain out and I couldn't bike. I did offer to walk to pick up whatever he needed, but he ended up asking a family friend to drop stuff off. I do worry about the future when there is a worse medical emergency and I worry about how I'm going to help my aunt or my parents.

[@saaraa7876]

I’m not disabled, and am surprisingly (to myself) competent and calm in emergencies that are happening to me. But when it’s someone else it’s just so stressful. But I’m definitely grateful I don’t have an extra stress factor, like having a disability surely would give me.

[@brendasmith2974]

A suggestion for you and your boyfriend if this should occur again-you may ask him once how he is feeling and then he must update you when it changes (better or worse)❤

[@cathab7594]

Even from a non-disabled perspective, I can fully relate to this feeling. My grandparents had medical emergencies while I was studying abroad, and my mom had to deal with all of it on her own. I was physically capable but not physically around to offer any support besides emotional. That brought along a whole can of feelings of being inadequate or unsupportive. Truly awful feeling and not wishing this on anyone. I'm very sorry for you, Molly! But trust that the same way that my family fully recognised my situation, and appreciated any emotional support that I was capable of providing, your family probably feels the same and appreciates you all the more for your loving support!

[@cheetahcreep]

god I felt this so hard. I was in London when my grandma had a stroke that she didn't really recover from. it hit the family so hard, and I was thousands of miles away. I'm so sorry.😢❤

[@cathab7594]

@@cheetahcreep so sorry to you too! Hoping all the best for your grandma!

[@cheetahcreep]

@@cathab7594 Thank you! grandma did pass away later that year, but she isn't in pain anymore and that gives me peace. I'm sorry you had to deal with emotional processing while abroad. it is scary. ❤️ wishing you and your family the best ❤️

[@MaryWissinger-id3ev]

As someone who is legally blind, I realated to this so much. I almost began crying in the middle of the video. Thank you for creating this video Molly, and thank you for all you do! ❤️

[@janewaysmom]

As a viewer, I just wanted to thank you for making your videos. My grandma has been losing her vision, and when I was a teen and didn't know anything about it, that was very scary, and I didn't know how I would cope or how she would cope. Her blindness is something genetically passed down, so there's a good chance I'll get it, and my mom might be showing early signs of it now. You being courageous enough to share your story has helped me to understand that you can still live a pretty ordinary life, even with blindness. I think that your sharing of your story has helped me to treat my grandma the way she would want to be treated, rather than treating her differently because of her blindness.

[@Angelesapollo]

I am blind, and this video is so emotional for me. I really feel what you went through Molly, as not being able to do all the things that a sighted person is capable of doing is really not a good feeling

[@deel2167]

As a former nurse (who is now disabled with multiple chronic conditions) I just want to reinforce that you are NOT a burden, and that there will always be someone who can help you *both* at the hospital. Will it take a little longer to get help in a bustling ER? Most likely. But there is always help available, even if it might take a little longer. I have also gone to the hospital many times by myself, because my husband is also disabled, and I've had to advocate for myself and ask for help. It's not easy, but it is possible. 💕

[@Mike-sj9si]

Molly, I admire that while it felt bad to not go with your boyfriend, instead of only thinking about yourself and only being sad about not going you instead did all of those things for him. Getting back from a stressful trip to medical facilities and coming home to the food you want, your family already having been called, medical advice already received, and everything else that you did really feels like good partnership ❤ You being disabled is an important part of this story and also I would say the same thing if you weren't disabled and there was another reason why you couldn't go with him. I am an able-bodied person who always wants to be helpful and there are times when I've been really sad when I haven't gotten to help in the ways I wanted to. I've really had to learn that I can still add so much value even when I might not be able to do the exact thing that I initially thought was the most important thing.

[@anainesgonzalez8868]

This is so nice ❤

[@rachelfang891]

Thank you for being so vulnerable with us ❤ I am such a fixer the thought of not being able to do more while hearing what you went through felt so heartbreaking and frustrating. But what I also heard in your story is that you are extremely capable - you know who to reach out to, whether friends or family or an ambulance. You did all the other things you could while your partner and mom were at the urgent care. You’ve gotten through with your mom at a hospital in a foreign country. All those things and probably others you didn’t mention are you being supportive, being present, and helping using the skill set you’ve built for yourself. Part of my brain was making mental notes of how to handle a situation like this if it ever comes up for me, because I can guarantee you I would have just panicked and been a burden for trying to help. I totally understand how the feeling of running up against your limitations is so frustrating, but I hope you can balance that in hindsight with the recognition that you were helpful and supportive in meaningful and important ways.

[@MollyBurkeOfficial]

I would also identify as a "fixer," which is part of what makes situations like this feel so bad. Thank you for your comment.

[@anainesgonzalez8868]

I made actual notes of what she did!

[@Shiloh.with.a.chance]

Thank you for sharing this. It's so hard to want to be the main help of the people you love when you yourself need help. I don't have vision loss but I do have a disability that makes me a bit of a burden in some situations. Even though I know it's best for me to step back and let others take over in those situations it's still so hard to accept. You did everything you could, even though you can't do things the same way a sighted person can doesn't mean that your effort and contribution isn't as valuable.

[@MollyBurkeOfficial]

Thank you

[@alexiabettencourt7535]

I think that an important thing to do in a situation like this is to communicate a game plan with your partner. It can seem scary in an emergency when you feel like you can't help much. It is also easy to get anxious about "what if it happens again". Perhaps when your boyfriend is feeling better you guys can make a plan of "What would he like me to do/ not do in this situation" "What was helpful/not helpful". Even go as far as to make a plan of who exactly you would call if you end up with him needing medical attention but your mom isn't around. My therapist calls it "bringing an umbrella" because my anxious brain tells me that anything could go wrong (like it suddenly raining when you are on a walk), she says "if you are anxious about rain, you bring an umbrella so you are prepared" then she asks for the specific situation "How can you bring an umbrella (prepare for) this situation?". This has helped me a lot with the paranoid anxious thoughts I get. I started planning and preparing for the possible scenarios that I get anxious could happen. I feel better knowing that if it does happen, I have a plan. Your boyfriend is lucky to have you. I am sure you being there for him helps him more than you could possibly know. You are not a burden to anyone. I think asking him what he wants you to do in a future medical emergency would put you more at ease. It is okay to not be the sole person that can help him. You wouldn't be upset with yourself, and saying you are a burden, for not being a doctor. In the same way, you are not a burden for your lack of sight. I wish you and your loved ones good health.

[@jenny-hamel]

I'm a resilience planner, and part of that includes disaster preparedness and response. I really appreciate hearing your perspective, not only about life events but also how you navigate the world. I want to be able to have strategies that help everyone in a community, especially those who need a little more help. Thank you for your vulnerability! Your channel has helped me (and many others!) gain perspective, and the work you do is helping to bring about change in a very real way.

[@mariacenteno4709]

Hi Molly! I’m an O&M instructor and I’ve been following your journey even since before I was working. I applaud your vulnerability. It’s never easy especially when you feel defeated and like a “burden”. I’m glad to see you have a wonderful and understanding support system. Maybe talk to an instructor to create an emergency plan for the future. You can create a list of nearby clinics & hospitals, a list of emergency contacts for both of you. They might even have some resources that I’m not aware of. I know this doesnt solve everything but it might mitigate some of stress. Thank you for sharing ❤

[@vampgaia]

My sister has a chronic illness and I know that she would completely understand how you feel. She and I have discussed how it makes her feel to be unable to participate, especially in activities related to her son. I can only empathize. I can't feel her literal pain. I love her so much. I feel inadequate because I can't help her get better. I do the best I can to understand and not make her feel less than.

[@shalacarter6658]

Hi Molly! Thank you for sharing your deep emotions with us. You are so kind and loving. My husband and I are both disabled. Neither of us are in power chairs, but we are in chronic pain. He is using a walking cane now. If we go anywhere, I have to use a wheelchair or scooter. About two weeks ago; I came down with horrible spasms and cramping in my whole body. I knew the doctor could not help and my meds were not touching it. I really wanted to go to the ER, but I did not want to put my husband out. It wasn't the driving; it was the sitting in the ER bay with me. Finally I gave up after five days and asked if he wanted to take me or if I should go in the ambulance. If they did not admit me, he would have needed to come and get me. He decided to drive me there. I was not admitted and he had to sit in the uncomfortable chair for around two hours. Trust me, he bitched about it. :) That is why I don't like to ask him for help that I need. I don't want to make things worse for him. Love you!

[@harveyabel1500]

I've read that doctors recommend seeking help after *three* days with an issue.

[@Nora-jt9zy]

I thank you for the courage you have to talk about your feelings so openly. I am 53 years old, and I’m heading towards partial disability. Naturally, this affects my family too in different ways. My income drops. I have less energy due to different health struggles. So I kind of feel like I’m not good enough anymore. It’s like my mind and my body run on different batteries. My mind is still the same old me, but my body struggles to keep up. I can so relate to the grieving. I think it’s important to allow ourselves to grieve when we feel like it, as long as we don’t get stuck in it. It’s ok to want to be all you can be for your partner, and be sad when you feel that there are things that hold you back. Just remember that he chose you because he thinks that you have something extra special that nobody else has. And he knows that you have a heart of gold 💛 And if your mom hadn’t been there, you would have moved mountains to get him the help he needed. Take care, Molly. It’s so good to see that you have loving people around you ❤

[@cypriennezed5640]

Feel your feelings, relatable queen ❤ Grief doesn't mess around and all we can do is our best ❤

[@shelleyb16]

Wow. What an emotional video!! Kudos to you sharing this so people do not feel alone. Also, big hug for you!!! I get it. But, as helpless as you felt, you were so incredibly unselfish at that moment and 100% put your boyfriend above anything you needed & that in itself helped in a way that can’t be expressed. Big love to your mum & the relationship you all have that she could be there in your place. I’m recently diagnosed with MS & already worried about being a burden at some point in my life, but reluctantly starting to let people in & help me. ❤

[@escott696]

Get the help and mobility aids in place before you need them, trust me

[@katiebrooker1437]

Thank you for sharing Molly. My dad went through something similar with mum last year (he also has RP). Mum went to ER in an ambo - so being with her during that time wasn't an option, but he was able to go up once she made it to the short stay unit. We made a deliberate decision for him to use his cane (if he's with me or mum we guide him) to make a very clear visual cue to the hospital staff why we were slower or doing things differently. Mum both times didnt want to have him come - worried for the same reasons your partner and mum were.

[@WackyLisa]

I'm near tears. I can relate to this so much. Currently, I'm the most capable of my partner and my parents. So, I end up supporting them in emergencies and scheduled procedures. It's better than nothing but I'm all too aware of my limitations. Luckily, the local hospital will now allow me to escort people home using Uber. I feel awful when I have to ask a nurse to help me find the bathroom or to page a volunteer to help me get to the exit. My value as a 'spare brain' (a semi-calm person with knowledge of medications and medical history) is really limited. No one has been able to figure out a way to teach me to do wound care or line care. Both of my parents are in their 70s so I fully expect emergencies to come up. I know I'll face them at the time and then bawl to my therapist later. For a bit of 'funny not funny'... helping a male use a urinal is actually fairly tricky and it's probably better to just ask a nurse to help as it will result in less work for the staff in the long run.

[@intesivec0re]

Molly I’m disabled there are things that I can’t do, you are not a burden. You’re the best, you always been encouraging, uplifting, and cheerful in the disabled community. You do anything you can and we are with you near or far. So I say keep up the good work always hoping the best for you.

[@littlemissshihtzu]

Molly, you are so many wonderful things and one of them is being a gifted teacher. The way you educate and help garner insight into the world of someone who is living with a disability is both thoughtful and incredibly impactful. Your vulnerability and rawness makes you even more beautiful than you already are. This video is going to touch many, many hearts. It certainly has touched mine! It goes without saying that you my dear, are a BLESSING, not a burden! 💝💖💓💕

[@ActualRealityChannel]

I'm back to say I feel this..... Never known anyone else who gets it. It always made me feel like there was a better way. Now I understand that as much as it hurts it is okay for for me to remove myself from the situation.

[@MB-id2ek]

It’s ok. Don’t blame yourself for things outside of your control. You did what you could and have lots of love and support around you ❤

[@samiamisme]

The muggle struggle is real. I cannot be a daytime awake and functional person. Neither can my husband and son. I go to bed at 10am and get up about 10pm. But from about 7am to "bedtime" I am pretty much useless. So getting things done at those few daytime hours just don't happen. For those many Dr appts I need to be on muggle time, i.e. business hours, I struggle so hard. The three of us all go to important appts with one or both of us. Between 2 or 3 of us we can convey our issues and gather the info being delivered. Molly you hit nail on head when you mentioned we all have our own strengths that we need to lean into. And we need to be kind to each other and especially ourselves. Being dependent on those who don't feel well themselves sucks. Like you said, we have to find our own ways we can be supportive for our loved ones and that has to be enough. Having said that, it's hard to not be that person for your person. It's hard not to beat yourself up over those things. You have created a greap supportive community you can turn to. Then you have all of us to unload to! You have a beautiful, mature insight to life. Your disabilities have opened up so many other beautiful ways to face the world and help others. I am older than your mom and I am always impressed by your emotional intelligence that we can learn from. Your inique situation has given us so much to learn from and I'm grateful for that. I have a lot of medical disabilities and the way you present your experiences has me going huh, I never thought of it like that. So thanks. I'm proud of you. You have a beautiful life, as you know. Ok I'm done rambling now. ❤❤❤❤❤❤❤❤

[@barkingfromnewmexico9448]

I understand what you are saying completely. Although I am not sight impaired, I am hearing impaired due to 80% hearing loss in both ears. It is very difficult for me to hear conversations, both in person and on telephones. My world is very silent. I dread ever having an emergency, but since my husband and I are "up there in age," it is bound to happen someday.

[@laurengretz4802]

Hi! Thank you for being so open and vulnerable in many of your videos! As an individual with a physical disability , this video truly has me experiencing all the emotions! Within the last two years, my Mom, who has been a caregiver pretty much my whole life, has been diagnosed with rheumatoid arthritis and has experienced a lot of challenges herself. As a daughter, I desire to help her through these challenging times, but I'm not able to physically do anything to alleviate her discomfort However, my able-bodied siblings are able to do anything asked and that helplessness feels so shitty! I wholeheartedly understand the feeling of accepting the challenges and uncertainties of disabilities most of the time but also, at times, (sometimes "happy" celebrations) become sad for us. I have had a really challenging (almost) two years myself where I've been, not so gracefully, balancing disability, grief, and uncertainties about when/how I will achieve my dreams considering that I'll have to overcome challenges and limitations (societal and physical) in order to achieve those dreams. I desire to have a committed relationship and children! However, even within my family, the desire and my physical ability to take care of children is often dismissed or challenged.Even though I have known that I've always wanted kids, the more it's dismissed, the more uncertainties and negative self talk such as "You will never achieve your dream of getting married and having kids" play in my head. It isn't helped that I feel like a dating "late bloomer" because I've just, in my late 30's, been given the opportunity to go on a few dates with open minded individuals. I am also very aware that my internal clock is ticking too. So, I am very afraid that the time to have kids is slowly disappearing. I have watched my siblings accomplish goals that I also desire but still haven't accomplished at this time and even though I am very happy for their achievements, sometimes, I'm very emotional about my desire and uncertainties.I had imagined my best friend and I, in the "perfect" scenario, one day falling in love and going through life's adventures together and we would help each other accomplish our dreams. However, almost two years ago, he tragically passed away which has been devastating! So yes, I've experienced a lot of challenges, uncertainties and grief around my disability, but I try to continue to be strong and continue to strive to find the purpose within the ongoing challenges and uncertainties to overcome. Thank you for everything!💕

[@QueenKitty08]

Gosh you had me sobbing. I'm glad you have such wonderful support

[@eyeseajujubee]

I can’t imagine how that felt. I’m sorry Molly 💜 I’m losing my vision and feeling unable to help in situations has been tough. I’m glad he’s okay.

[@kaleighbrendle8373]

I’m so sorry that you had to go through that but I am beyond grateful that your boyfriend is all right. As a visually impaired woman myself who has had to navigate multiple medical emergency situations with family members I completely understand the feeling you are describing. It’s hard to know what to do. Your loved ones are lucky to have someone in their life who cares as much as you do and tries as hard as you do. Navigating society as a disabled person presents us with challenging emotions every day but I commend you for not only braving through it but talking about it

[@myriambressani7019]

Thank you so much for being so real, as always. Your authenticity helps me connect with mine.

[@MollyBurkeOfficial]

Aw

[@katiemackcomments]

This was a really beautifully vulnerable video, Molly ❤ thank you for sharing, and can I just say, your boyfriend seems like a real keeper!! The fact that he thought that those experiences could be shared to help other people and even to help you, i’d just so beautiful ❤

[@Keeper0fmyHEART]

My husband last year had a heart attack on March then 9 weeks later had a stroke. Both instances he had to go via anbulance. We were lucky that both times the ambulance emts let me travel with him, but that won't always be the case. Im his memory while he's my eyes. As his memory I'm needed to help answer questions as well as his focus for mental stability. Since the stroke this has become even more of a requirement as the resulting brain damage has resulted in extreme confusion for him. We jokenly refer to each other as the others service human. I totally get how you felt as i felt that to. I cant drive and my only way to go with him was if i traveled with him which depended on others making exceptions. When he was in surgery the day after the heart attack I was walking through the halls of the hospital to find his room. I felt totally lost and helpless as well as scared and alone. I had no idea where to go and my service human was not there to help me. I get it. One thing i can suggest is to talk about and implament an emergancy plan. Pack an emergancy bag that has those things you might need in these types of situations. Talk about it with the people around you. And, practice or playout an emergancy while thete isnt really pne. This way when there is your prepared with a plan. You cant completely prepare for everything or every situation but you can prepare overall. I'd love to say things get better however, as last year taught me and age, I'm 53 now, getting older sucks and will have emergancies. Theres no way to avoid them.

[@RianneCtenVeen]

the 'try to be prepared' (for example, have a 'go bag'), play out scenarios when nothing is happening can be great ... nobody wants to be in any emergency, but Sod's Law/ chance etc means most of us will experience something - if we're prepared it can be one less stress to worry about!

[@Keeper0fmyHEART]

@RianneCtenVeen yea, last year was a doozy. I had 3 hospital stints myself to his 4. After my 1st going into the 2nd, I started thinking of hospital hacks and other things needed for even a 1 night stay. For instance I have a mplug in multi outlet cord that also has 3 USB ports on it, charging cables both USB C and Micro as well as something to wrap around the cords to attach them to the bedrail all included in each bag for each of us. We both have our own bags. That way, I just grab the 1 needed. His bag has a sheet and fleece blanket with a set of pajama bottoms or shorts with a couple of shirts. He has vitiligo and is extremely sensitive to chemicals. For me, I put in a fleece blanket, nail care kit, brush, and comb. You get the drift. A couple of tips, especially for the blind. ***Using one on the Velcro cord wraps to attach the cord of the call button to the bed means you never lose it as there's always that point where you know the cord is. ***Getting a clip-on cup holder to attach to the bedside tray for your ice water cup they always give you and telling each and every nurse about it prevent you from knocking it over. Put this in your go bag so you always have it. I literally knocked over an entire glass of water 1 night because the aid put it there when i was asleep. I had the old one toward the back of the tray so I wouldn't knock it over, but this aid stuck the new one right in front, so my hand hit it first thing. *** If you sleep with a fan, there are portable ones that you can clip on the tray. Or pick 1 that you have if it's a bigger one and during a stay. Get the hospital maintenance to approve it for use. They will put a sticker in it. After that, put that fan with your bags and don't use it at home. Yes, experience here. Both of us use fans at night. *** Make sure you always know where all your things are at all times. Even if you go in unconscious, talk to your family to always locate your things. Hubby lost all his stuff after the heart attack because we both assumed it was with us during a room change. It wasn't, and everything disappeared. It's your responsibility to keep track. A tip I have is put a locator on any bags, purses, wallets, etc. This way, things can be found. *** Put copies of important documents in your bags. Things like medical poa's, advanced directives, etc. If the hospital doesn't have them on file your family, support person will need them. Remember that preparation is the biggest key, and preparation is not asking for bad things it's being ready for things that will happen because well life. Hope these ideas help others.

[@katyaochoa]

Thank you for sharing and making this video. I'm visually impaired & have chronic pain due to VM and I dealt with a similar situation last year with my husband. He came home from work early due to pain and collapsed on the floor due to chest pain. He was conscious and didn't have the energy to sit up and was in a lot of pain. I was terrified. I have relatives who live kinda close by but they wouldn't get to us in time and I know how freaking expensive ambulances are so I couldn't call one of those. I found a hospital that was ten minutes away and suggested we take public transportation but my husband decided to drive us there instead. I was so scared the entire drive over. I was able to help him inside and got him seated and told the nurse what was wrong. I gave her our insurance but told her I couldn't see well and would need help filling out forms if there were required. They ran a bunch of tests on my husband. The entire time I tried my best to stay strong and supportive but I was terrified and just wanted to cry. We sat in an exam room for awhile and my brother came for extra support which I was thankful for. My husband is doing okay but the whole experience shook me to my core and I truly felt helpless and useless in the situation. I started to make plans if it ever happened again and I signed up to get first aid and cpr certified online. I just want you to know Molly that you did help your boyfriend. You made sure he was safe and felt loved and supported when he returned home. You knew to call your mom for help. I know how helpless it can feel like but you really did help. It can be hard in situations like these where we can't see or do what other able bodied people can but we can still help in our own way. Thank you again for sharing. I hope you are doing well and I hope you have a wonderful day.

[@18BDM]

Thank you for this video - I have several chronic illnesses including seizures, so it was really touching to hear this. Glad he is ok now! I have a chronically ill mother and can totally relate to this difficulty, where you just want to help and are limited. It is so tough and having that support network around is so important. Sending big hugs to you, Molly!

[@ch1979or]

im dealing with unexpected full disability at 40 years old, going on 4 years now. it was a real shock, as i didnt realise how much it would impact my husband, and my family. this really hit me because i get caught up in my own existence, i overlook the toll it takes on my loved ones. i get really upset that they all have to accomodate me. its exhausting, and i FEEL the pain of not wanting to be an imposition. its invasive and undeniable. it helps to know that others feel this pain too. love you molly!! thank you for making our struggles make sense, and that we arent alone

[@l.s.8244]

I really appreciate that you made this video, with your boyfriend's support. My parent is a nurse who is now disabled, and this gave me so much to think about as they age. I am really thankful for your vulnerability in making this, and your maturity in the perspective you were able to have as well!

[@carrieonline8227]

I’m blind and hearing impaired and this made me cry with you. Thank you for so eloquently putting into words these painful and often hidden experiences. 100% relate.

[@akneemoose3383]

My husband is disabled and I am so glad you are documenting this. Would be nice for emergency and medical staff to watch this for great educational purposes. Disability is not recognized in all of us and my husband looks perfectly normal. Thank you 🙏. We are not burdens

[@misssierra5121]

Thank you so much for posting this. As someone who’s visually disabled and is losing their vision, this was nice to hear that i’m not the only one going through these feelings in these kinds of situations. All of your videos always help me so much in dealing with my vision loss. What you said about feeling like a burden in that situation hit me so hard. I feel that every day. Thank you for talking about this because I know it must have been hard ❤

[@MollyBurkeOfficial]

Just know that, although we may feel like a burden sometimes, we are not.

[@misssierra5121]

@@MollyBurkeOfficial Thank you so much. Sending love and strength to you too ❤️

[@brittanylachapelle7243]

Thank you so much for posting this. I have multiple chronic disabling illnesses and feel very alone in so many ways... this was so relatable and real. Thank you

[@doorofnight87]

I loved your vulnerability and honesty here. Having a loved one have a medical emergency is hard at the best of times, and this really highlights how poorly our world is catered toward those with any kind of disability and that there are people (like anyone who would argue about your guide dog) that seem determined to make things harder for the disabled.

[@AbstractlyDelen]

As someone who was attacked by a dog I was pet sitting last June, them bitting me on the eye/nose region, and having bl00d rushing down my face from my eyelids…. I feel this. I kept screaming for Siri, and I couldn’t see if she heard me or not….. one of the scariest moments of my life. I could have gone blind, and that was one of my thoughts funny enough when I was waiting for the ambulance. My thought was “welp…. Maybe I’ll meet Molly after all this” 😂😂😂 gotta have some humor in dark times I’m so sorry you had a medical emergency, and I hope you are okay 🩷

[@MollyBurkeOfficial]

I am so sorry you had to go through such a horrifying event.

[@AbstractlyDelen]

@@MollyBurkeOfficialthank you! I still work with animals, but it can be hard. And as a disabled person myself, I know the struggle of feeling “less than” in an emergency. You just want to help, but you’d be “more in the way.” I wish I could give you some advice, but a long distance hug is all I can offer 🩷

[@heathermizner2084]

Molly I really appreciate your willingness to be so open. Your feelings are so valid. It is so hard to not be able to help disabled or not. You are such a strong woman.

[@TheYoyo147]

Thank you for sharing and being vulnerable. I’m sorry you and your loved ones have been dealing with such issues. I love how you mentioned the ways that you do help and can help. It’s a huge help to have family notified and keep people up to speed during medical emergencies and to have food and supplies at home. Those are all huge supports. It takes a village to take care of each other and you’ve built and maintained a great support system. My heart is with you all!

[@annehoward2039]

Thank you for being so open and honest with this.

[@DisabledInNature]

Thank you so much for sharing this and for your vulnerability. I have muscular dystrophy which is also progressive and the thing you said about grief sticking with you forever is so true. Most days I'm content but sometimes it hits. And it's okay to give ourselves space to feel it when it does. ❤

[@amberforte94]

Lovely video. As a sighted person, I appreciate you making me aware of this. Thanks for sharing and being vulnerable. ❤❤

[@christinacrusius1278]

As someone who had a hospital stay within the past year, don't underestimate the value of emotional support, even from afar. I had a group of disabled friends (who are now scattered across the country) send virtual encouragement, balloons, and cards, as well as validate my frustrations. It meant a lot and helped me through. Additionally, I can't tell you how much time it took for me to try and communicate the situation with loved ones. It was a relief to me when others stepped in to share that load.

[@alexandralord3679]

My heart goes out to you, Molly. I can’t imagine how difficult it is to want to help and not be able to. You have so much to offer your loved ones and are not a burden, but I totally understand your feelings. Able-bodied people are incredibly fortunate to not feel helpless and unable to help most of the time. As an able-bodied person I am fortunate to not feel helpless most of the time. But when I broke my leg and couldn’t get around by myself and relied on others for support in many ways, I felt helpless and like a burden and realized how much I had taken my health and mobility for granted. I am so blessed to have healed and regained my mobility after a few months, but I know there are many people who deal with these struggles everyday. Which is why it’s so important to me to listen and learn how I can support my loved ones and patients with disabilities as a PA in the medical field. It’s so important to be kind and recognize that everyone needs some support in different ways, at different times in their lives and that’s okay. I always want to provide that support and never make my loved ones or patients feel like a burden. I have learned so much from your channel over the years I’ve followed you and admire you so much. Thank you for sharing your perspective and struggles so vulnerably with the world. You are awesome!

[@jacquelinecasey1361]

You are very lucky to have so much support in your life. So many disabled people who need help don’t have any.

[@stevenfidler9037]

As a fellow blind person, I feel you, Molly. I appreciate your sharing. I have shared this with sighted people in my life to help them to understand as well. Thank you for this post.

[@MagnoliaPantherWoman]

Hugs! What you were able to do is so helpful. I have family at a distance that helped me in the ER via phone and text by updating loved ones and discussing things together when it was needed. It allowed me to be present with myself enough to get the care I needed. It was also an emotional relief.

[@SlothDaan]

Thank you for opening up, thank you for sharing your story and thank you for scripted subtitles. ❤

[@laurenmorriseidson4009]

This video made me cry I do feel seen but you helped me put into words things that happen in my life. Even the phrase "the grief of being disabled" kinda hit me. Thank you. You're not alone!

[@Amber46327]

Thank you for being so vulnerable with us. I feel very similar and I can truly relate to this. My mom is such a wonderful support to so I know. 💕

[@malingerdle]

Molly, thank you for sharing your experiences and feelings. Like a disabled person, I can relate - in my own way, based on my limitations. I am a femur amputee and live with among other things constant, intense pain in several places in my body (and have a service dog who helps me a lot!). I have several times experienced the feelings you are talking about that you experienced. I think about it so often and feel a frustration about it. My disability came seven years ago. Which makes me often think of a "before" and "after". Not in everyday life, then I've learned to live with my new self and my new conditions (mostly, of course I can also get sad and frustrated sometimes - you probably understand what I mean...). But it is mainly in similar situations that you mention in the film that I find the most difficult, I want so badly to be here for my loved ones but I don't want to create more pain for them by being the one who needs help when it's actually the other way around! This means that I sometimes feel that those around me avoid bringing up difficult things for them, because they think that I have enough to deal with what I am going through. It's hard because I want to be here for my loved ones. Again: thank you Molly for putting into words what I (and many others) are also going through. Take care!

[@pickle1200]

I am disabled with two boys one of the hardest things over the years has been missing events and emergencies because of my disability. This is such a helpless feeling. Much love there are a lot of us out here that understand this unfortunately.

[@avenity8409]

Molly, thank you for being so open with your emotions. Many moment in this video have hit very close to home. I have spastic cerebral palsy and it's hard for me to walk or stand for a long periods of time. I'm generally weaker and I have problems with my coordination and balance sometimes. A couple of weeks ago I was the only one with a driving licence that could drive my grandma to the dentist. She has a stage four cancer that has spread to her hips and legs. As I was walking her back home, her pain was so severe that she could barely walk and had to lean on me with almost her full body weight. I swear, we could have collapsed on her driveway had I not pushed all the pain I felt as far away from my mind as I could. And it was only about 30 meters from the car to her door. It felt awful not to be able to give her the help she deserved. And I'm only in my twenties. My prime time! It's going to get even worse as I age... It reminded me of the time that my grandpa had passed and I wanted so badly to attend his funeral but my leg was in the cast from the hip down so my parents told me that it would be to difficult for me to stand on one leg during the funeral and manoeuvring between very narrow cemetery alleys would be next to impossible. So everyone went and I stayed alone at home. It happened over a dozen years ago but I still feel guilty that I hadn't insisted on going.

[@TheMysticalCat970]

If you had never gotten blind you wouldn't have ever met your amazing guide dogs. We love you Molly.

[@kimothy996]

I appreciate how difficult this must have been for you. It sounds like you did an incredible job with these scary situations. I appreciate knowing this and feeling this are sometimes two different processes. It is extremely helpful to have someone like you around to help around the home and make calls when someone you love is sick in the hospital. Please don't under estimate how significant that kind of help is, people are usually so ragged when returning from ER visits. Recently I had to go to the ER a bunch when my family was sick. I was your mom in these situations, and I still struggled with my own disability and pain. I was lucky I didn't have a medical episode that took me out, because there are times where I would have been in your shoes and I wouldn't have been able to take my loved ones to the hospital. The people I love and care for have difficulties with communicating, especially when they don't feel good. Being able to visually see what's going on can provide so much information, and I can only imagine how incredibly hard it was to only go off of what your partner was attempting to communicate. I want to provide some ideas that may help in the future. These may not be applicable to your situation, and I want to give these ideas in case it is helpful to you. So you can adapt ideas and you can feel that you have more agency during scary medical situations. 1) nurse hot lines are a god send. Most insurances have some sort of hotline to call. When I have needed feedback it's been extremely helpful. They will guide you through questions and provide advice on if you should seek urgent medical care. 2) Ask how someone is doing and have them put it in a scale from 0 (everything is fine) to 10 (the worst thing ever). I'm sure you are aware that this is common question medical professionals will ask to judge pain, and you can apply this in multitude of ways. How's your pain on a scale of 0-10? How's your fatigue on the scale? How's your tummy issues on a scale? How's your mobility? Etc. I have annoyed my family with these questions because I find the answers extremely valuable, especially if they can't speak well. They just have to give a number. I can judge the severity from their perspective, and I can keep track and see if their perception of their medical issue is getting better or worse over time. Sometimes when I'm talking to a family member I will ask about their pain and them saying "it's alright, it just hurts a little". Then when I ask on a scale of 0-10 and I get an answer that's around a 6... even when I can take a visual assessment I can't always see that their pain or issues are spiking that high, and I would have never known without asking for a number when they are struggling to communicate. 3) this one may not apply and I would still like to share it anyways. If it makes sense, it might be helpful to have some of your own medical equipment in both of your homes. PulseOx monitor, blood pressure monitor, test strips (C19, UTI, pregnancy, etc), thermometer, ekg/ecg monitors, etc, are all things you can buy online. Some devices hook up to an app on your phone to record the information, some devices have a limited memory where it can remember the last few results, and some don't have any way of holding onto recorded information so I will take a picture of the results for future reference. My family has a pulseOx monitor that will beep at a set limit if their oxygen drops too low and will continue beeping until the device is taken off or until their oxygen levels get back into what we set to be a normal range. I haven't looked for this myself, and some devices may read out the results (my thinking is other folks who have visual impairments also need to be able to get this medical info too). The reason why I suggest this is because this information can help you to understand how he's doing too. He may not have heart issues, and if you know his BPMs spikes when it's getting bad then you can have that as another way to monitor medical situations. Even though docs will often say they can't trust home devices, that does not mean they don't listen when you say something like "yeah, so my loved one's Apple Watch says they are in afib which is why we're here." 4) from the first incident it sounds like you didn't realize he was having issues at first, it must have been scary to find him not doing well. I know in my home I can't always hear if something is happening, especially if I'm occupying space on the opposite side of the house. My family tends to have medical issues that require using the bathroom, and when there is an emergency they don't always remember to bring their phone so they can reach out for help. I bought call alert buttons and put the buttons in strategic places (I have a button on a wall next to a toilet and I have one on a lanyard so it can travel with the person around the house). It came with multiple speakers you can plug into the wall, and you can grab a speaker and take it with you to where you are gonna be in the house if you are going to be a little farther away. This has been a great device for my family to use. I especially appreciate that even if my phone accidentally dies in the middle of the night of if I forgot to put the ringer back on my phone that I will still wake up to a blaring alarm when someone needs medical attention. It's given me a lot of peace of mind, and it's done the same for my family. 5) If you see this will be an ongoing issues for some reason, I would consider contacting the nearest hospitals to where you and your partner lives and see if they have services they can provide to help you navigate medical situations/transportation/buildings if you need to go with him and help for another emergency. I am unsure if they do have anything like that, and I do know that hospitals have interpreter services for folks whose primary language is not English. I would hope that they can accommodate folks with visual impairments. Legally they would have to accommodate you if you or your ward needed emergency services... legally speaking I am not sure if that this would apply with your partner unless you are his MPOA (medical power of attorney) or his spouse. I truly hope your partner is feeling better and does not have any more medical incidents. You did a great job with the tools and info you had Molly. From my own experience, it's hard to be in the ER when my loved ones are sick, and it's also very hard to be at home prepping things, finding important information, and keeping everyone up to date. ❤

[@melissamorley8099]

As a person with a significant physical disability, I get it because as much as I would want to be a support in situations like those, I would need help. Thank you Molly you do make me feel seen in this video and so many others. I really appreciate what you do Representation matters

[@pattyervin7242]

So powerful - I have so much respect for your courage in being so honest and vulnerable. Your voic3 is such a gift to others whonstruggle with these feelings. Much respect snd gratitude.❤

[@LifeWithAndiNicole]

Oh goodness. This triggered some major tears for me! Yes..grief is so strange and it comes at the most unexpected moments. Thank you for being vulnerable so that those who understand feels like they aren’t alone. I am content with my vision loss and with RP I know there will be more loss down the road yet I’m ok right now. But then I’ll have moments like you shared and it can be a huge struggle and a burden feeling. Then I wish I could see more, etc. I’m grateful for the amazing friends near me and my family when we lived near them that I could count on when things happen. It’s scary. Thankfully we are able to go through the emotions and then be able to move forward. I needed that cry. I guess I’d been holding on to that too long so thank you Molly. I really appreciate you. ♥️

[@Scarletlight525]

My guide dog had a medical emeregency one time. He was having some GI issues at the time and this one evening, after we had gone to bed, he just started getting like... cramps Looking at his stomach, even nipping at his sides and his whole demeanor showed that he was stressed and in pain. I'm fortunate enough to live in a city where we have pett ambulances, so I could make the call to have someone pick us up. If I had lived in my old hometown, that wouldn't have been an option and the nearest emergency vet would have been over an hour away. I was so eternally grateful in that moment that there was such a great option, but also very much aware of my own inadequacy and dependance on living in the right area... I have been around for some family members' minor medical stuff. I distinctly remember this one time my dad dislocated his knee (basically everyone in my family is hypermobile) and obviously he was in quite a lot of pain, but he could still communicate to me what he needed. Basically all i had to do was get him a firm pillow to put under his leg, to help him elevate it so that he could eventually pop it back in (sorry for the graphic details), and I got him a glass of water and a painkiller because... yeah, pain...

[@SuuRibeiro]

Molly, thank you for being open and vulnerable. ❤

[@isabelespinosa3484]

This is something that I have dealt with but am only now realizing when watching this. I worry constantly about being a burden with a service dog. In accidents, Ive had to stand aside when I previously would be able to help. I constantly worry about where I am going and how a service dog would be perceived, and it can prevent me prom some activities. This is a feeling of grief, and you are so right in describing it.

[@tracywestby2231]

I know it doesn't help in your heart in these situations, but you are such a strong and accomplished person it amazes me. My chronic issues only began around 5 years ago and I couldn't do half of the stuff that you accomplish every day! Thank you for being you and sharing that with us!

[@harveyabel1354]

I noticed your avatar and for a second, thought it was my old one of our dearly missed Felix! Beautiful cat you have

[@sarahcampbell146]

Gosh I love your vulnerability and honesty. We will always be battling these things. Talking about our feelings makes us feel less alone!! ❤ love you molly

[@tammydialgray2835]

Thank you for sharing how this feels. I struggle with this feeling of being a burden every day and it’s very hard to handle. It is helpful to hear you express your experience. ❤️❤️❤️

[@alliellioxenfree]

Same. Learned to change my thinking and it's changed my life. Thinking/feeling like a burden is one less-than-useful (if not dangerous) thoughts i haven't been able to eradicate.

[@micheleann1737]

The difference that should keep you feeling appreciated even when you are struggling in emergencies is that as a partner you were giving him all that you could versus someone who doesn't have disabilities helping their partner somewhat but not to their full ability.

[@camillanunn7893]

I understand these feelings so much! Thank you for sharing.

[@joejojojohnson9121]

Molly, love you! Never stop being you and being vulnerable. I know its hard. You're realness is needed. Youre a beautiful person in all ways❤

[@HowCaseySeesIt]

I relate to what you said at the end. I’m not married and don’t have kids but I’ve often thought about not being able to see my husband’s face at the end of the isle or not being able to see an ultrasound of a baby, etc.

[@dogsreadtruth4548]

Thank you for bringing up the dreaded "Burden" word... I am disabled by an Atypical Neurodegenerative Brain Disease (Dystonia, Gait, Cognitive Changes, Vision Changes), my Guide Dog retired in July and no Successor Dog yet: so in addition to feeling like a Burden because I do not drive= Recently, I could not help by Driving my daughter to the ER at 2am when she was sick and her toddler was sick and her husband was deployed, I am also trying to figure out the Retired working dog logistics..which also impacts others. I feel Terrible when I just "Stay Behind" to try to make things easier for others. Molly, you are helping me and so many people by sharing your thoughts here. All I can think to tell you is that maybe we just need to be kinder to ourselves, when our disability gets in the way of us being able to help others in certain ways that we wish we could help. Thanks Heaps Molly for your bravery in sharing your feelings about this difficult topic.

[@Visitkarte]

Oh, Molly, you are not a burden. You saved him by calling help and by caring. That’s more than most people have.

[@jwsm2]

Really love your honesty about what happened with your bf and your mom and you're feelings about it.I admire your vulnerability and strengths.

[@LectronCircuits]

Good golly, Miss Molly! Audience wishes you all the best. Cheers!