Picking out this more stylish stand made it that much easier to transition from walking to being a chair user.
It sounds shallow, but it's not. Design is important, not just for function, but for those who are being placed in a life altering situation. Design has the potential to not only solve problems, but make monumental life changes that much easier. For me and the like a wheelchair will become a part of my skin. It is not unlike clothes and how we desire to express ourself. If wheelchairs were viewed more as a device of expression, then perhaps they would be handled and designed differently. The team that set me up in this chair was wonderful. They came over to where I was staying and stayed late making adjustments while I tested it. They even borrowed me the frame and wheels while I was in LA so I could test it out.
"Tried a wheelchair today. While I am glad such things exist to assist me through the progression it was a big milestone and I couldn't help but get teary..."
I definitely felt more independent while testing it out and I did feel a sense of relief to have such equipment available to me in my time of need so I was happy, but at times I had to turn my face away from everyone because tears would well up. I can't help it. I don't feel like my life is over or that I am any less of a person, but these days I am not the best at hiding how it really feels deep down. It is still hard. It is still very tough. My mind is like a self running projector showing me images of my past years and how it has all progressed--where I was then and where I am now. Recounting when I was walking with more ease or mentally zooming in on my feet as they climb a curb. How did I do that? It feels so long ago, yet like yesterday, and at times I just don't know how I got to this point. What happened to my body?
After that we ordered some chinese take-out and had a great heart to heart conversation about DME industry, insurances and the types of scenarios and people they experience. It was very insightful since designing such things is something I want to do in the future. They were great people and went out of their way to take care alot of the wheelchair fitting process in a short amount of time. I'm not in the clear quite yet. Now, begins the fighting back and forth with insurance to see what they will cover, that will be epic.
Doctor visits
In addition to the wheelchair I had numerous doctor visits. Cardiologists, pulmonary, blood tests, MRI's, etc. The past few years I've barely seen a doctor. As a matter of fact, after I received my final diagnosis of HIBM from the Mayo clinic I never really went back to a doctor again. After all there was nothing a doctor could do for my condition and after years of dealing with insensitive doctors I needed a break.
However, and if you are an HIBM patient you should do this, it is a good idea to get these regular check ups once a year. You need to have a chart, because when trials do happen you need a baseline. After the trial/treatment they can start documenting if you are improving or not. Make sure to keep a yearly chart on yourself. Test your creatine levels, too.
Friends and love.
Most of the trip Jason was not with me due to work. He flew in Saturday and we drive back to San Fran together. When Jason is not around it always takes time to adjust to another person. Everyone helps in different ways and even though my friend Sandra, her husband is an HIBM patient, he requires lifting in a different way than I do. In short, we all have our own styles and comfort levels. My friend, Sandra and wife of the ARM founder, flew up to SF and drove me to LA and I stayed with them during my time in LA. They are wonderful and obviously understand the needs of an HIBM patient. Each time I visit and stay there I notice I need much more help. Last summer I visited and I could go to the bathroom by myself, but this time Sandra had to help me each time so now she had two HIBM patients to take care of. Two patients to lift, two to take to the bathroom, two to help shower and get dressed. She is wonder woman.
She says she doesn't mind, because that is what you do when you love someone. Very recently, I also stopped driving so she had to drive me to each of my doctor appointments.
I slept in their son's, Niels, room. Night time always seems to be the hardest because I am alone in the bed as well as it being the time of the day where everything that happened kind of comes down all at once.
At night I need help turning in bed. Last time I was at Sandra's I could turn myself, but this time it was a little tougher. If I get myself into a position I can't get out and I am stuck for the night. She has to move Bobby, her husband, all night. He needs help to move his legs and his arms and I am getting to this point, too.
I remember crying in the middle of the night and not knowing it. Most of the time I tried to move myself because I didn't want to wake Sandra up in the middle of the night, but at one point it was so painful that I called her. I was half asleep.
Our way of communicating is actually to whistle. My whistle was a very low one, but oddly she heard it and came right in. Half asleep I cried, "How could you hear that?" and told her how much it hurt from not moving all night. She moved my legs to a new position. My legs were deeply asleep, stiff and frozen cold from no circulation.
See, most of us can move our bodies while we are sleeping. Our body is working even though we are not, so we move throughout the night without waking up. However, I cannot do this. I literally have to wake up to even think about moving and normally need someone to move me to a relieving position.
At the end of a busy day of appointments I fell into bed extremely tired, both physically and emotionally. I'd pull the covers over my head and cry as to not wake up their son. But, more than anything I was thankful to have such great friends. The thing with friends is that very few are really there for you and for some this even goes for family. So, when I find people that love me and go out of their way for me I am deeply indebted.
I wrote this one night on my iphone:
"They are more than friends and even more than family at times. Sometimes you experience love so great that there are no words. At the most humbling, saddest, darkest moments seeing a pair of hands come to help you is what gets you through. You can say you love someone and that you care, but it is the actions that always shine through. Love is selfless acts in action. Love is taking on accountability, responsibility even when you don't want to and even when it "inconveniences" your life. I cried tonight. So much I could not only taste my tears but I could smell them, too.
So many emotions and I don't think I have the words to explain what it feels like. Not to self-pity, but it's hard no matter how you shake it. Not so much sadness or depression - rather the seeing of the road ahead. It's also feelings of gratitude, love, physical tiredness and all the things in between. You think you know what love is and then you see it again for real. The people who are there in the most difficult time in your life, even when it is not easy for them to see it all happen. I wish I could describe it. I wish there was a camera on my shoulder and in my heart, so I could document all the little events, feelings and observations that create a whole picture. I wish I could better explain it. I wish you could see it and feel it.
When you experience love it only renews you and encourages you to keep pushing even when it feels like no one is listening, especially when no one is listening. It encourages you to love others and give of yourself to others despite it putting you in the most vulnerable of positions. The position of rejection, or unrequited love. The way they have helped me and saved me could never really be communicated nor measured. Not everyone has the opportunity to experience such love housed in the least of desirable moments. I feel blessed for that and if I could encourage others to love like that...just know that it does matter...to someone like me in those fleeting most darkest of moments.
Out of the corner of my eye I see all the things that Bobby and Danny can't do (HIBM patients & founders of ARM), and while I don't think any less of them because they can't I see myself in them. And while I respect them so much, if I can help it I don't want to be at their stage and they feel the same way for me, too. I need to keep fighting because the technology and research exists where possibly I, and others, don't have to be wheelchair bound. It is getting there that is the hard part. It is easier to take the paths of more assistance because it really does make life easier. I mean, who wants to struggle walking 60 steps to the car when you could just roll there? It is a slippery slope and I have to do my best to have balance between knowing when I can't do it and knowing if I just push myself--I can.
I am going to make an assumption and say it was hard for Bobby and Daniel to see me at this stage of a wheelchair. Knowing my legs are dying and that my arms are next. He said I am a representation of the people they are trying to help and why they started ARM 10 years ago. I personally know they take it to heart when they see other patients progressing. It weighs on them heavily and time is of the essence...Alas, this is what the research world is like. Not everything happens quickly or the way we want it. For him, he says, it is too late and he is already in a wheelchair, but for me I am an example of what they are working for and was supposed to save from getting to their point. Perhaps I was not meant to be the patient that research will prevent from getting worse or being permanently wheelchair bound, and if this is so I at least hope someone else can be saved. I don't say "saved" to demean those that are in wheelchairs because obviously I don't see them as "less than", but it is a tough jorney and if it can be prevented, then why not?"
