We are not alone
So many times in life we face challenges and think, "I must figure this out by myself". In my ongoing life lessons, I have learned that this is far from the truth. If we are willing to reach out, there is someone willing to grab our hand.
Having a chronic illness can put us in the uncomfortable position of having to ask for help. We made it so far in life and we prided ourselves on figuring out most of this stuff on our own. Suddenly(or not so suddenly sometimes), we are thrust into a new life because of illness. A new "normal" if you will, that forces us to rethink our position in life.
Transverse Myelitis(the disease I was inflicted with) is a particularly cruel illness that can take away our independence, our will, our desire and more. We may not have learned how to ask for help before TM, but now we are forced to in some cases.
For me personally, it took me 10 years before I even met another person with TM. No wonder I felt alone. Not knowing anybody with TM to being willfully independent my whole life, led me to a breaking point.
Early on in the infancy of the internet, I found the myelitis.org website which also had a forum. This was really the first time I had talked to or read about others with TM. It would still be another 9 years or so before I would find a Facebook group that was already 1000 strong of others who had TM just like me. Today, that group has over 4000 people, wow!
What a relief it is to talk with others on a daily basis who can identify with what I am going through. The fact that I can mention something and not have to explain what I'm talking about is another huge relief. Part of the problem with complex illnesses is they are hard to explain. When people ask you about your illness, you can see them fade away as you try to explain things, so after a while you just say something like, "I have a bad back", because it's easier. This kind of stuff makes us feel isolated.
Luckily there is a lot of help out there and a lot of people who want to help others. One thing I realized after asking for help or putting my real self out there is that people naturally want to help out others. A good example of this was the time I dyed my goatee blue to support Transverse Myelitis Awareness. I asked my wife and daughter if they wanted to participate and they jumped on it immediately. But the astounding part to me was that my daughter shared about TM to her class in 3rd or 4th grade and she pitched the idea of turning their hair blue to her classmates. They all jumped on the idea right away and next thing I know I have a picture of all of my daughter's classmates with blue hair of some kind. How awesome is that!
It doesn't end there. My wife went around and talked to her co-workers and suddenly, people were posting on Facebook with blue hair supporting me and TM. Dozens of people that did it because they wanted to. They wanted to part of it. To my wife's credit, she knows how stubborn I can be and I never ask for help. As soon as I let me guard down a little, she immediately jumped in. She already does so much anyway, but this was her way of helping on the outside.
Knowing people that share a disease with you is definitely a huge benefit but I have found I need to do my part as well. I need to be willing to reach out to others and share my truth and be willing to be vulnerable. When I participate in helping others I feel good about myself and it boosts my self-esteem and morale.
Thank you for listening.
Sincerely,
David Hilliard
Having a chronic illness can put us in the uncomfortable position of having to ask for help. We made it so far in life and we prided ourselves on figuring out most of this stuff on our own. Suddenly(or not so suddenly sometimes), we are thrust into a new life because of illness. A new "normal" if you will, that forces us to rethink our position in life.
Transverse Myelitis(the disease I was inflicted with) is a particularly cruel illness that can take away our independence, our will, our desire and more. We may not have learned how to ask for help before TM, but now we are forced to in some cases.
For me personally, it took me 10 years before I even met another person with TM. No wonder I felt alone. Not knowing anybody with TM to being willfully independent my whole life, led me to a breaking point.
Early on in the infancy of the internet, I found the myelitis.org website which also had a forum. This was really the first time I had talked to or read about others with TM. It would still be another 9 years or so before I would find a Facebook group that was already 1000 strong of others who had TM just like me. Today, that group has over 4000 people, wow!
What a relief it is to talk with others on a daily basis who can identify with what I am going through. The fact that I can mention something and not have to explain what I'm talking about is another huge relief. Part of the problem with complex illnesses is they are hard to explain. When people ask you about your illness, you can see them fade away as you try to explain things, so after a while you just say something like, "I have a bad back", because it's easier. This kind of stuff makes us feel isolated.
Luckily there is a lot of help out there and a lot of people who want to help others. One thing I realized after asking for help or putting my real self out there is that people naturally want to help out others. A good example of this was the time I dyed my goatee blue to support Transverse Myelitis Awareness. I asked my wife and daughter if they wanted to participate and they jumped on it immediately. But the astounding part to me was that my daughter shared about TM to her class in 3rd or 4th grade and she pitched the idea of turning their hair blue to her classmates. They all jumped on the idea right away and next thing I know I have a picture of all of my daughter's classmates with blue hair of some kind. How awesome is that!
It doesn't end there. My wife went around and talked to her co-workers and suddenly, people were posting on Facebook with blue hair supporting me and TM. Dozens of people that did it because they wanted to. They wanted to part of it. To my wife's credit, she knows how stubborn I can be and I never ask for help. As soon as I let me guard down a little, she immediately jumped in. She already does so much anyway, but this was her way of helping on the outside.
Knowing people that share a disease with you is definitely a huge benefit but I have found I need to do my part as well. I need to be willing to reach out to others and share my truth and be willing to be vulnerable. When I participate in helping others I feel good about myself and it boosts my self-esteem and morale.
Thank you for listening.
Sincerely,
David Hilliard
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