I have gotten by through life being legally blind and hard of hearing, but due to some newly diagnosed issues and an issue I put off having investigated, my life has taken a bit of a turn. I was diagnosed with hypertension, diabetes, and high cholesterol, so I have to take several pills a day and change up my diet and exercise routine… not too much of a big deal honestly. My back, on the other hand, had been giving me more and more problems and causing more pain than it ever had (which I’d attributed to an old car crash that injured it).
I put off going to the doctors to have it checked on for decades, living with the pain and going about life as normal, but it had gotten a bit worse and it prompted me to finally go in and get it checked. Firstly, I got good news, the injury to my back from the car crash had healed, something I was told it could not do without surgery, so score one for me. The reason I went in, was that I’d begun walking with a cane to take some of the weight off of my back, but that was barely helping and was causing pain in my hips.
I was sent for a battery of bloodwork and X-Rays and was soon diagnosed with DISH (diffuse idiopathic skeletal hyperostosis) aka Forestier’s disease. Basically, my ligaments are hardening, my whole spine is lined in a thick calcification and bone spurs formed up and down my spine and are connected by forming bridges. Adding to that, I have a few deep curves in my spine and a neck that is completely straight without any curvatures. My spine is pretty much like glass; easily broken, chipped, or fractured from too much movement or if I fall or am struck.
I was moved from using a cane to a walker (and will need a wheelchair) and my days of practicing martial arts ( after nearly 35 years) or even running around were and are over. I was utterly broken and am still grieving honestly, but I am making changes in how I live (moving to the first floor, medical commode, etc…) and finding things I can still do to fill in the void of what I have lost. I am learning lessons I never wanted to learn as I lose my ability to walk, things I took for granted are now missed, little things, like roughhousing and wrestling with my sons, chasing my four kids around, and even working out as I used to.
I found a website here that has been a great support to me, as well as researching this horrific disease online and hearing others on Youtube talk about their own experiences with it. So I guess the first lesson I learned is to know your enemy, know what it is that is attacking you, so you can face it head-on instead of just letting it attack you while your head is in the sand. I’ve learned small things I can do to help it a bit, such as taking an NSAID to help with the inflammation and seeing both a Rheumatologist and getting physical therapy.
There is no cure for DISH, there are no real treatments, and few doctors even truly know much about it. Most say it is a disease that affects predominantly the elderly and that most often it has no pain, but I’ve had this for decades now, am only 44 as I write this, and it is fairly extreme pain 24-7.
The second lesson I learn is;
“It’s okay to cry, to mourn, to feel beaten down, but you have to get back up, you have to find a way to keep on keepin’ on! – Me”
If your DISH is progressing and you lose your ability to walk as I am, you have to go through the grieving process for what you have lost; it isn’t easy, it isn’t fun, it is hell, but it is a necessity. Go through it, if you’ve lost the ability to do certain things you loved, try filling that void with other things you love or have wanted to do. I lost martial arts, but I am now doing more music, writing, poetry, and art to fill in for what I cannot do. I tend to look at the bright side of things, I can still use my hands and live a long full life, even if I am greatly impaired.
Another lesson I learned, is that if you have loved one’s around you, you’re not the only one impacted by losing your mobility and grieving your loss. My wife and kids have all been a bit…different, since learning everything and my wife has told me several times she feels so horrible being saddened because it’s not her going through it, but in fact, everyone around you is going through it. You are not alone, not in your grief, not in your sadness and confusion, and not in the help that you might need, so it is imperative that you remain kind to those around you and do not let your mental wounds bleed onto others who are also wounded.
A lesson I found invaluable is to find things to be excited about, and find things that are good because, in all honesty, you face a shitstorm of changes and negative things and need to have some good, some happiness to combat the depression it can and will cause. It’s very important to have some good things happen or to look forward to in life, and to appreciate the little things in life. Don’t dwell and toil day in and day out in misery, that is not good for your psyche or physical health, find some pearls of joy, somehow, someway…
Another lesson I learned is don’t allow self-pity to rule you; you’re still you, still the same person, and your value has not lessened!
Do what you can do, don’t wallow in an endless sea of tears forsaking all that you were and did before because honestly, you are still that person. It’s important to head right back into life after your period of grief and mourning, and go through the work of sadness, but remember life is waiting for you to come back. You’ve lost something huge and your grief is understandable and rational, but do not let yourself wholly disengage with life, because then all you will have left is your sadness.