The Five Stages of Grief – Over And Over Again!

I think it is commonly accepted that the framework of the five stages of grief – denial, anger, bargaining, depression and acceptance – not only apply when we lose a loved one, but also when we suffer a physical trauma resulting in the loss of limb or physical disability - or when confronted with a diagnosis of MS.

The thing with progressive MS is that you cannot just go through one stage, tick it off the list and move on to the next, but that it's an ever-recurring cycle, which never ends. Let me share my experience with the five stages of grief.

Well, initially the denial part was quite straight forward. The initial "probable" diagnosis and comments made by my doctor, that it might turn out not to be MS after all, made it very easy for me to push any thoughts of MS aside. For years after above words were spoken, I felt well enough to be able to easily dismiss the probability of MS. I was a master in finding "perfectly reasonable" explanations for the various symptoms I had, or the weird sensations I was feeling. And my wife, as well as doctors, bolstered me in my beliefs.

So for many years I was permanently in denial. Though this actually suited me rather well, as it allowed me to live a happy life without a future with MS clouding my horizon.

When I started to have more pronounced relapses, the anger started to come in whenever I wasn't feeling well, but was still followed by periods of denial when I was in remission.

The bargaining for me presented itself in the form of telling myself that if I didn't overdo things and was careful with my diet, I could stay in control and not fall into a relapse.

Depression was not on the table, and with the chance of a recovery from each flare-up, there was no reason to really accept my illness (or was that denial again?).

Things all changed when my MS turned into the secondary-progressive type, with relentless progression of the disease leading to increased disability and dependence on others. Denial was no longer an option, and anger took over. Anger over my body betraying me. Anger at myself for not being strong enough to fight the illness. Anger at God for allowing me to be stricken with this disease to begin with. Anger at God for 'choosing' an aggressive progressive type for me. Anger (or resentment) at others whose MS allowed them to still function more or less normally and with fewer limitations. Anger at loved ones for not understanding me. Anger at everything and everyone.

I bargained again with myself (or with God). I would accept my situation and stop being angry, if only I could keep the abilities I still possessed and didn't progress further.

And when I did progress further and lost the use of my left hand, then I fell into depression, because I didn't think I could cope with all this.

Over the past six years, it has been an endless cycle of anger, bargaining and depression. I have been on anti-depressants for a long time and seem to be able to control that side for the most part. What I find difficult to control is the anger and the frustration at being trapped in a body that has betrayed me and forces me to depend on others to such a large extent.

If I knew that this is the whole extent of my disability, and that my condition will not deteriorate further, I might be somehow able to accept it. But I can't. For several reasons.

Firstly, I feel that if I accept the situation, that I'm giving in and let the disease win. Although I'm clearly losing the battle, I'm determined to fight on, no matter how hard it may. It feels like I'm going three steps backward for every two steps forward, but it's still better than going backward at an even faster pace.

Secondly, I fear that if I accept the current situation, I will have to go through the whole grieving process all over again when I further deteriorate. It's a moving target.

And lastly, although I have been in a wheelchair for several years now, I find it hard to accept that I will never walk again. Or dance. Or use both my hands. Be pain-free. Sleep through the night. Able to get up in the morning without having to be transferred and dressed by my wife. Hop under the shower. Drive. Feel the grass under my feet. Use the bathroom. Do things spontaneously without meticulous planning. In short, that I will never again be able to live an independent life. Somewhere inside of me, there is the remote hope that within our lifetime there will be a cure. Or at least a treatment that may reverse some of the nerve damage. Even getting the full use of my hands back would give me so much more independence than I have now.

So clearly, with MS, the five stages of grief are not stages, but recurring cycles, forcing me to live through them over and over again.

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