Getting a rare disease -- a cavalcade are sadly available -- can be an incredibly isolating experience. Even the doctors don't know much, and finding pathfinders and guides, folks who can share their experiences, seems like an impossible task. While there are plenty of caregivers and social workers, smart well-meaning people, the best thing you can do is become a self advocate.
One important step to take is to create your own therapy program. Sessions with trainers last one hour in formalized settings. You live your life twenty-four hours a day in every kind of place; make use of that whenever you can. As one small example, after my caregiver helps me into the shower and gets me on the transfer bench, she hands me the shower head on the flexible hose while she gets soap and washcloth. At first I held it in my good right hand, but soon decided to put it in my left. At first this was tricky; sometimes I couldn't hold on very long and dropped it, getting both of us soaked. But strength and dexterity steadily increased, and I now not only hold it firmly, but can move it around easily. This has provided other important benefits as well. When I drive I can now use my left hand as well as my right, as it can grip a steering wheel and maneuver it, albeit with mixed capacity. Not there yet, but a lot better than where I started from.
And this kind of effort is available to anybody. Noshaba Malik of Pakistan got TM in the eleventh grade. She never came to the US, never saw advanced American doctors. But "because of the medication I was given, physiotherapy, and great care by my family", she began walking again. It was not easy and still isn't; walking is slow and unsure, and bladder incontinence issues persist. But she graduated, went on to conquer college, and is working on a doctorate in Physical Therapy. Nashoba wrote how, "I take my limping leg and my uncontrolled bladder with me. I go out every day, I go to college, visit my friends, and go shopping...I know I have to struggle, I have to study hard, and I have to get a good job.
"I want to convey a message to people with disabilities: 'don't confine yourself to the four walls of your home, come out and shine.' I also want to convey a message to all able-bodied people: 'Disabled people don't need your money or attention, we want your respect.'''
The other critical step you can take to become a self advocate is to make full use of the internet. For people with obscure conditions it is a Godsend, providing more information than sometimes the doctors--treating every possible ailment--even have.
At least as important is reaching out to the local organizations formed around your ailment. At minimum, these provide comradeship and support, the few others that share your rare situation, and can provide solace and guidance.
Even better, they can help enormously with how to deal with your condition. In this compelling video a couple talks about what happened when their child got TM. After contacting the Transverse Myelitis Association (TMA) online, they got a call from the organization's president and were given crucial advice on how to deal with their situation, advice that made all the difference in the life of their child.
It is your life. Take control of it as much as you can. After all, the best advocate you'll ever have is yourself.
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