Good Grief

Grief is a part of life. We grieve the loss of a loved one. We can also grieve the loss of what might have been. The loss of hopes and dreams. We all go through times of grief for things like this. Maybe an injury kept you off the baseball team that you thought would be your future. Maybe it is finding out your child will have special needs, and their future goals may be learning to walk or talk, instead of being the CEO of a fortune 500 as you had hoped. We grieve the dissolution of a marriage, or a child who wanders away from the faith. There are likely hundreds (thousands even) of scenarios that cause us to suffer a loss of some kind, and result in us grieving.

Grief can be necessary and even good. Grief is a natural human emotion, and a process that is as natural as living and dying. Grief can also be bad. It can be a state we enter into and never leave. We can linger too long and let sadness, anger, denial, and bitterness rule our hearts. There is a sinfulness in dwelling in grief too long, however, dealing with grief can be helpful as we come to acceptance, embrace the truth, and move passed it. This is not to say that there is not still a hurt, or a void left behind by the loss, because there frequently will be, especially if our loss is that of a cherished significant other.

Reflecting on all my recent news, I realized all the grieving that I have done, and am still doing. When I first had surgery in September 2009, doctors had hoped that they could remove the tumor from the nerve, and I would not have any ill effects. My surgery that day lasted 8 hours. Just moments after waking up enough to realize where I was, or even who I was, my mother blurted out that the doctors had to remove 7 inches of my femoral nerve. They took a portion of nerve from my inner thigh and tried to reroute it to make my thigh continue to work, but doctors weren't hopeful, and it could take up to 12 months to let the nerve heal and see where we end up. I remember bursting into tears as I heard what I considered to be worst case scenario. I also remember Chad (my husband) saying to my mother that they were going to wait a little while to tell me. My mother was never good at keeping secrets :)

After that surgery, it took me weeks to just sit up in bed for more than a minute or two. I had 3 incisions, each 8-12 inches in length. I had been completely disemboweled during surgery to get to the spine and nerve so they could find the tumor and remove it. It was by far the roughest, most painful thing I have ever been though. Those weeks were very sad, and very difficult. There was a lot of grief and even more tears. Gradually I started to feel better, my stubborn attitude kicked in, and I was determined to get better. The doctors weren't sure I would even be able to walk, but I did. Within a few months I walked without any help. First I used a walker, then a cane, then I just walked, although I wore leg brace the first year that kept my left leg locked in a straight position. I even got back to a fairly fast walking pace, and went on regular walks. I hobbled around on a tennis court, hopping on one good leg and playing couples tennis with some friends of ours. I rock climbed, and kayaked, and got a recumbent bike so I could still ride with my family.

I grieved of what might have been, while realizing there were some things I could never do again, no matter how determined I was. During this time, several friends and family members started jogging (something I had tried for years to get a few of them to do). They really enjoyed the runner's high. Running is something I cannot do ever again. It is not physically possible to run, jump, or kick with no quadriceps muscle. So I grieved.

There were more surgeries to try to return function to my leg. Surgery to help my knee pain that happened because my leg didn't work properly. Surgery because the first surgery caused painful scar tissue to form a neuroma (nerve mass). Surgery to fix a pinched nerve in my right leg because of my change in gait. And there was pain, so much pain. Pain from the surgery. Pain from the resulting issues. Pain from my neck and back that had a previous issue, but were now being contorted in an unnatural position as I tried to swing a dead leg forward and walk. There were plenty of things to grieve. Then, a team of doctors and orthotists at RIC (now Shirley Ryan Abilities Lab) that worked to get me a lighter weight leg brace, that bent went I walked. I kept walking. I worked out. I pushed and pushed, and after sitting on the side lines for 2 years, I joined my family and a group of spectacular friends, and did a 10 mile Tough Mudder obstacle course.

This whole process has been a roller coaster. Lots of waiting and seeing how things will turn out. I have had to grieve, let go of things, evaluate the new circumstances and change course. As Chad likes to say, we "adapt, improvise, and overcome." That is exactly what we have done every step of the way. We cry. We brainstorm a new trajectory, and we move forward. We move through the grief, and work hard not to get stuck in it.

Now we have circled back around. Now as I sit here and type, I am grieving the loss of my "tumor". I have been thinking all this time, that in 2004 when symptoms first appeared, it was due to the tumor they found in 2009. For 14 years, I have been dealing with my "tumor" and all it involves. All the ups and downs, the surgeries, the tears and pain. So, when I first felt symptoms in my right leg in 2011, I felt fear. I was scared that the tumor had returned. I was afraid I would lose the use of my right leg that had been doing most of the work since 2009. Then we learned it was something different. A mystery neurological disease that was unrelated to the rare nerve tumor I had. I grieved some more. It seemed that lightening had struck twice. I now had 2 different problems that both had a very rare occurrence rate, which made finding solutions difficult as no one really knew how to help. I grieved the unknown, and gradual loss of feeling and strength in my "good" leg.

Now in 2018, I am grieving the loss of the "tumor" I thought existed. I now have to wrap my brain around the fact that I have had a progressive neurological disease for 14 years. I never had a tumor, or 2 diagnoses, it's just been one all along. I cannot begin to adequately describe all the poking and prodding, the appointments, testing, waiting, the cost of all of this (emotional, physical and financial). Today I have to grieve my past and my future. I have to deal with the reality of my new diagnosis, which can be a difficult disease. It is rare enough that they cannot really give me a specific prognosis timeline, or treatment plan that works for everyone. They know what has helped some other people, and they hope it will work for me.

Eventually, we all need to move on so we don't get stuck, but today I will just grieve. I know I will continue to fight, it's what I do. I don't take bad news lying down, I get up and consider it a challenge to rise above. Unfortunately, with all the above events, my fight doesn't pack the punch it once did. I grieve that too. Today I will grieve. Tomorrow I will adapt, improvise, and overcome.

With God's grace, we will continue to get through this, one day at at time. He will faithfully strengthen us for each day ahead. Graciously, the Lord has kept Chad and I together as a unit, lock step, through all the ups and downs. I couldn't be more grateful to my Savior for His amazing grace! To God alone be the glory!

What are you grieving today? How will you adapt, improvise, and overcome tomorrow?

Until Next Time~
Shari