I was so mad I thought my head was going to explode.
“Mary, what's the matter?” Nick asked when I walked into the living room.
“The Clinic. The Clinic is ignoring me. What's-his-name has put me on ignore and isn't returning my calls. I am so mad I could spit.”
“Uh oh. He's doesn't know what a mistake he's making. And please go outside to spit.”
My husband, Nick, the nicest man in the world, was a quadriplegic. It had all started innocently enough on a Saturday afternoon. His toes were a bit tingly after we walked around Seward Park. By Monday he could hardly get out of bed. We were fortunate to get an appointment with his Primary Care Physician the same day. Examination, CAT scan, spinal tap. We were told it wasn't MS, but the doctor didn't have a diagnosis. Worried and scared, we left the clinic with Nick in a borrowed wheelchair.
He began a treatment of steroid infusions which was frequently the starting point for Multiple Sclerosis and similar diseases. Several referrals later he was diagnosed with an autoimmune disease with characteristics similar to MS. It was Devic's disease, which is now called Neuromyelitis Optica. The neurologist said, “I suppose you are going to go home and look this up on the internet. Let me warn you not to read anything older than ten years. Everyone with this disease died back then. We can do better now.”
Oh my god. Not like that was scary or anything.
Fortunately, there were only two steps up to our front porch. We quickly bought an aluminum ramp so Nick could stay in the wheelchair rather than try to use a walker to climb the stairs. When he could no longer manage the stairs to our bedroom we converted my study on the main floor into a bedroom. As he got weaker we bought a hospital bed that we could raise and lower so he could scoot downhill going either direction.
There was no manual on learning to live while disabled. The PT and OT who started coming to our house were invaluable in teaching us how to adapt. To get the wheelchair up over a curb, tip it back. To get pants on, roll side to side. When you tip your husband over backwards when over enthusiastically lifting his feet onto the couch, call 911. And why didn't the chair come with anti-tip bars?
Adjusting was really hard. In addition to the constantly changing physical needs we were struggling emotionally. We had to give up the outdoor activities we had enjoyed and our life was taken over by medical appointments. We were feeling resentful, cheated out of the retirement we had planned. We were envious of friends who continued enjoying our previous lifestyle. Disappointment, uncertainty, and fear engulfed us and our emotional reserves were drained away. Smiles were endangered and laughs were extinct.
I don't know how he managed, but Nick was amazing. Even with all the pain from demyelinated nerves he refrained from taking it out on me. I wasn't so even tempered. Sometimes, frequently, I had to actually stop myself before speaking and count to ten to avoid snapping at him. We were tired, frustrated, angry. It was exhausting just getting through the day.
His disease was rare and there were no FDA approved drugs. A treatment for MS would help for a while, briefly giving us hope, and then quit working. The doctor would prescribe a different treatment and we would give that a try. But Nick continued to get weaker and we had to keep adjusting to his deteriorating condition. Rather than scooting in and out of bed on his own he started using a slider board. When he continued to lose upper body strength we bought a patient lift. This required putting a sling around him, manually pumping up the lift, swinging him into position and letting him down gently. He was too weak to use the manual wheelchair. The fancy new power chair relieved me of having to push him around the house. The recline feature also helped reduce the chances of another deep vein thrombosis and more pressure sores. Despair was closing in.
Nick's Primary Care Physician was at the Clinic, a large, independent medical practice. It was a good-looking building with the name emblazoned on the side; originally an office building but now converted to a medical clinic, nine stories tall, 205,000 square feet.
A major flaw in the renovations was that the planners forgot to include a patient lift. They couldn't transfer Nick from his wheelchair onto an examining table. He couldn't get a proper physical. I was asked to bring in digital pictures of his skin issues, including what turned out to be a pressure sore, a very painful and serious situation. If he needed a CAT scan or any tests that required him to be out of his chair he was sent to the hospital.
We were outraged. It was hard enough getting to one appointment. It took three exhausting hours just getting ready to leave the house. It was irritating having to make arrangements for transportation to a second appointment. This wasn't equality. It was beyond unreasonable and he still wasn't getting proper medical care.
When we asked his PCP about getting a patient lift he said that he had tried but couldn't make any headway solving the problem. Nick's cardiologist also practiced at the Clinic and said he wasn't happy about having to receive reports from the hospital doctors. He preferred to read the tests himself, as he did with all his other patients.
I couldn't find any information on the Clinic website to file a complaint or a phone number to call and try to resolve this issue. I called the Executive Director and CEO and explained the situation that Nick was not receiving appropriate medical care because he couldn't transfer to an examining table. The man was amazed to hear this and sounded very concerned. “Surely you husband can't be the only one. I'll look into it and call you back.” He even gave me his direct line.
Okay, we were overwhelmed just trying to get through the day and up to our eyeballs in medical appointments. A couple of weeks went by before I realized I hadn't heard from him. I called his direct line and left a message. A week later I called again. I called his secretary and left another message. I was beginning to get the feeling the Executive Director was ignoring me. Despair turned to rage. This is why I was so angry my head was going to explode.
Previously, we had solved a similar problem with the Hospital Infusion Center. Nick was required to be in bed for the new treatment he was starting there. When we arrived for the first time they didn't have a lift to transfer him. The staff quickly borrowed one from the emergency room, transferred him, and began the process. It was a long day. We had arrived at 10:30 in the morning and were ready to leave at 4:00 PM. It then took two hours to borrow the lift back from the emergency room. Nick, a very gentle and patient person, was miserable and uncharacteristically cranky. I was so irritated by the time the lift arrived I could hardly talk. The charge nurse wasn't happy either. She gave me a phone number to call and file a complaint.
I woke up the next morning still fuming and called the number, detailing the problem at great length. The Ombudsman was very understanding and explained the lengthy, cumbersome procedure for buying new equipment. He said he would look into it. Several phone calls and a couple of months later the Infusion Center had their very own shiny new lift.
Inexplicably, I was so naive as to think it would be easy to solve the same problem again at the Clinic. Unfounded optimism. Wishful thinking. Delusional. The Clinic website boasted that they put the patient first. So why did they fight us instead of just going out and buying a lift? No idea. Now we were faced with dealing with an uncooperative adversary.
Did we have the emotional energy to take on the Clinic? We discussed filing a complaint with the U.S. Department of Justice which would take an entirely different level of commitment than talking with a sympathetic Ombudsman. Fortunately, our daughter was as incensed as we were. She wrote our letter to the DOJ and emphasized this wasn't just about us; many more people would benefit. This was undoubtedly a key consideration when involving the DOJ.
Thanks goodness we had her support because it took a year to resolve the complaint.
The U.S. Department of Justice accepted our claim that under the Americans with Disabilities Act, the Clinic was discriminating against us. We were not receiving health care equal to that of a person without disabilities.
The DOJ suggested mediation and we agreed, but it never happened. There were many phone calls between us and the DOJ. They continued to ask for more details in response to the Clinic’s claims. It dragged on for so long the agent assigned to our case was transferred and we had to bring a new person up to speed. Whenever they called I had a jolt of anxiety that they were going to say they were dropping the case. However, they assured us that our case was important; they were moving forward.
Each time I had a chance, I asked the DOJ agent, “Please talk very slowly when you are discussing the case with the Clinic lawyers.”
“Why?” he would ask.
“I want this to cost the Clinic as much as possible,” was my spiteful response.
It would have been so much cheaper for them, so much easier on our frayed nerves, if they had just bought the stupid lift to begin with.
When the case was finally concluded the Clinic signed an agreement to have a dedicated lift room and a trained lift team. When a person called to make an appointment, the receptionist was required to ask if the patient needed help transferring. In addition, the Clinic had to establish a means to resolve patient grievances. I hope, in the end, they really regretted making that decision to ignore us. Ha, take that you cheap bastards!
The best part of all was the first time we went in and met the lift team. We told them how pleased we were and jokingly said we thought there should be a plaque on the lift dedicating it to Nick. We gave them a quick explanation why. The lady who had been hired to head the team and who was responsible for training gave us a warm smile. “We're delighted to meet you and glad to be here. We have already helped eighteen people since we started just a few months ago.”
Hearing that felt so good.
Nick gave me a smile and asked, “Mary, are you happy now?”
It didn't wipe out all the aggravation of the past year, but yes, it certainly made me happy. Yeah for us and yeah for the Department of Justice!
Author: Laura Nicol
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