By Sarah Wall, Guest Blogger
No one likes to wait for anything it seems. Expectant moms can be overheard saying, “I wish this baby would hurry up and get here.” Americans are not a patient crowd. We want to pay for our groceries at a kiosk, instead of waiting to pay a cashier. We want our packages delivered tomorrow, not next week.
Since COVID became a part of our vocabulary, we are now waiting to return to work, to sit at a bar, to eat in a restaurant, and to send our children back to school. Waiting is not easy; it’s inconvenient, it tests your patience. It’s just plain hard. And I never wagered on a wait like this.
My waiting story begins when I contracted a little known and typically fatal condition called DIC (Disseminated Intravascular Coagulation).
This was a health crisis I couldn’t have foreseen. My life was dedicated to healthy living and regular exercise. With a master’s degree in health education, I was able to help thousands of others learn about the health risks of smoking, obesity, high blood pressure and the benefits of healthy nutrition and regular exercise.
On November 9, 2019, a disease from unknown origins arrived to ravage my body. I spent almost three weeks in the ICU, intubated, and on kidney dialysis. When I came out of my medically induced coma, I learned both of my feet needed to be amputated, and nine of my fingers amputated or cut down. DIC causes micro clots in the small blood vessels supporting the extremities. Without adequate blood flow, the tissue begins to die. Three surgeries last December removed these dead parts of me, and I began a long period of waiting. Waiting to get the bandages off, waiting for wounds to heal, stitches to dissolve, and staples to be removed. Waiting to brush my own teeth, take a shower, and hold a fork.
After hospital discharge on New Year’s Eve 2019, I moved to a rehabilitation facility. My work included three hours of daily therapy to master the ADLs (activities of daily living). More waiting filled my days: waiting for therapy sessions, for showers, and meds, for visitors, and food from the outside world. During the endless hours alone, I thought about what life would look like after all the medical waiting ended and I could go home.
During my three weeks in rehab my family, with help from a contractor we knew, arranged for our home to accommodate a wheelchair, and acquired assorted medical equipment to meet my needs.
Now I faced a new wait: to walk again on prosthetic feet.
I waited for the skin on my legs to heal so I could be fitted for prosthetics after about six weeks of healing. During my hospitalization, I had been given large doses of intravenous fluids to support blood flow and blood pressure. The fluids proved too much for my struggling kidneys. Massive blisters erupted all over my body and damaged my skin, especially my legs. In a typical amputation of a foot, the skin on the back of the calf is used to create the flap covering the limb. My surgeon seemed to pay particular attention to the back of my legs prior to my amputation surgery. He did not say, and I did not ask why he was doing this. I learned many months later he was evaluating the integrity of my skin to be used to create the flap to close the wound.
The closure of the flap to my residual limb — the part of the leg that remains — healed beautifully. The skin on the bottom of my residual limbs continued to blister. We treated and tended to multiple blisters over six months. The blisters would heal in one place, then reappear elsewhere, impeding my progress. I couldn’t even get fitted for new feet because of blisters.
Finally, some five months after amputations, my legs were healed enough to be fitted for prosthetics. I was beyond ready for this step; I visualized seeing eye-to-eye with my husband, my sisters and my son. The fitting process was painless and interesting; my new feet would be ready in about 10 days. More waiting.
Trying on my new feet for the first time on June 9, I could hardly wait. It was a joyful moment when I took my first steps on prosthetics, as two prosthetists looked on. I was so excited to stand up and look my husband in the eye as my sister recorded the moment on her iPhone.
My husband carried my new feet when we left the office, armed with a two-week walking schedule. Finally, the waiting was over, and I would get to work learning to walk again. The next two days, I put my legs on and walked around the house and outside, on the new access sidewalk.
My new feet felt heavy and clunky, but I was thrilled to be walking. Three days in I developed a gigantic blister on my left leg, the size of a water balloon. I had been advised what would happen: no walking, more waiting.
The blister took an agonizing six weeks to heal. I left for my family’s annual beach week in Hilton Head, where I never got to feel the ocean or get in a pool. By mid-August, I returned to my prosthetist to try a different type of foot. With high hopes this new option would work for me, I put some ointment on both legs and a patch of non-stick gauze. Blister prevention would be my new mission.
The new feet were much harder to get on. They attached to my legs with a heavy black stocking that I had to roll up my thigh to create suction. The suction holds the prosthetic foot in place. With the help of my prosthetist, we got both feet on, and I was ready to stand and walk again.
I was more than ready for this moment. As a health educator who has remained fit and strong throughout my life, I used my down time to exercise at home to be stronger and ready to walk. These feet, or really this system, felt better right away. The feet felt lighter and they didn’t seem to chafe in any tight places.
I walked between the parallel bars a few times, then I sat down so we could take everything off and check for redness or blisters. So far, so good! I was so excited to begin again, almost three months after my first try. So much waiting. I had hoped the waiting was over. I was hungering for mobility and independence.
It was not to be. Not yet. More waiting. But we are working on that. I will walk again!
My high level of disappointment led me to brainstorm about other routes to getting out of the wheelchair. I settled on investigating water therapy. I connected with a physical therapist who specializes in water therapy and has experience with amputees. My first session was scheduled in late July.
Water therapy became my unexpected silver lining as I wait to walk again. It was a lot like the moment Annie Sullivan taught Helen Keller how sign language could help her learn the world around her. I could move my body; I was free again. I have been fortunate to gain strength for walking by getting into the water 3-4 times a week.
Have you noticed how waiting almost always has a silver lining? That newborn baby with those perfect little toes. My wait is not over, but I have discovered the silver lining in waiting. For me, it is water. Patience is a quiet virtue, resting with each of us, not seeking any acknowledgment but always waiting to be called on. Accepting the wait can make a moment pleasant instead of stressful; your acceptance can be rewarded with a smile, a hug, or a thank you.
We can learn to wait better. We can build our patience reserves. COVID provides the perfect continuing education opportunity to learn to wait with patience and reap the unexpected rewards.
Sarah Wall is a health educator who is navigating transition. A double amputee who also lost most of her fingers, Sarah is a dear friend of Gerri Leder with a story to tell of triumph over tragedy.
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