“Accept finite disappointment, but never lose infinite hope. “
Martin Luther King, Jr.
Life at Lifecare was short-lived.
Over the course of the next few weeks, Jitish had started to engage his left torso and limbs. He started to wriggle out of his hand-cast and brace. Started to fold and flatten his left feet repeatedly, as though he had just discovered that he could move and couldn’t stop. His right hand remained severely contracted and stiff. The doctors recommended stretching them every couple of hours, to keep the muscles from contracting. Jitish continued to straddle between level I and II on the Ranchos Los Amigos Scale of Cognitive Function; non-purposeful movements and limited response to external stimuli.
In the midst of it all, I was working on Jitish’s Guardianship hearing scheduled for the 1st of July at the Wisconsin Civil Court. This was a whole other stressful subject to have dealt with at the time. In many US states without an acting Power of Attorney, one has to file for a Guardianship in order to make medical and financial decisions on behalf of who is a minor or disabled; even if that person is your spouse. We didn’t think of getting a Power of Attorney, a lot of us still don’t. No one would speak with me, none of the banks or credit card companies would talk to me to block his accounts. It was getting challenging to speak to the insurance companies and medical institutions about Jitish’s care. There came a time when it became imperative for me to get that Guardianship. The social worker at the UW Madison hospital helped out with giving me initial information regarding the matter. After a month of paperwork, the day of the hearing had finally come. It made me sick to the stomach thinking about the guardianship hearing. It was even harder to stay away from Jitish for a whole day, for the first time since the accident.
I had only been cleared to drive a few days back, on condition of staying off all painkillers. And so, I abided by that rule and went from having Oxycodon and Morphine to zero in a few days. I was terrified to drive. The first thing I usually did when I sat in the car was to call Jitish. Or we were usually together. I didn’t want to sit behind the wheel without him by my side. I had to accept that my expectations won’t always be met by the present. I had to start driving to save money, and be more mobile. Also I’d rather have family with me in case I broke down during the drive. Necessity truly is …
The house that we had intended to call home, in Beloit, was never lived in. Our dear friends helped us move and set up the house. My sister also helped set up the kitchen in the hope that some day we would move in. That never happened. That house, we had hoped to move into and celebrate our first wedding anniversary, make happy memories at, continues to be a dream. I couldn’t bear to live in that house for a day without Jitish. I slept on the couch, like I always did whenever Jitish was away. It was surreal appearing in court and hearing everyone talk about the accident and everything leading up to the day. The hearing was at an actual courthouse, with an actual judge, with an actual civil court jury, sans the dramatics you see on television. I was just glad I had a probate lawyer next to me, helping me through it and my father by my side keeping me together. The judge mentioned how he had overseen so many victims of motor-vehicle accidents pass through the court, sharing with me that there was hope. And that I wouldn’t have to bear the title, for Jitish could come and reclaim his civil liberties when he is able. Hope. Guardianship papers signed, sealed and served. Time to wrap things and be on our way to the LTAC.
I had to stop by my workplace to drop off a few documents and activate my computer, making plans to come back to work. I was running out of my medical leave of absence and it was time to get back to reality. We are non resident aliens in America, and at least one of us has to work to stay in the country. I had hoped that when my parents saw my workplace it would be a proud moment. I didn’t expect to hobble on crutches into the building with my mother. Nonetheless, I think she was proud that day. It was a heartwarming experience seeing so many of my colleagues and superiors stop by to see me. I am truly humbled. Thank you, Joe, for running across buildings trying to activate my laptop. For the hopeful and supportive messages you had for me. Thank you, Katie and everyone on the culinary team, for cooking us an entire month’s worth of meals to take with. I cannot thank you for your selfless support during the toughest time of our life. We are filled with deep gratitude for your thoughtfulness.
“Forget injuries. Never forget kindness.”
The first day Jitish turned his eyes to look to his right was the day of the Guardianship hearing. I have to think of this as a cosmic sign that he was going to make it out. Things would look brighter someday. My sister’s husband, Param, visited us as well. I was happy to see him. Jitish never showed any signs of recognition. Just blankly stared at people. But when Param bhaiya visited, for the first time, we felt that Jitish registered someone he remembered from before. Jitish had fixed his eyes on him, almost as if he was acknowledging his presence non verbally. We hoped.
At the hospital, I always stayed close to him, jumped up on the hospital bed whenever I got the chance. Navigating around the many wires and tubes passing through. I needed to be close to him and I hoped it made it better for him. I hated lying down alone in the hospital. I felt lonely. And I hoped that he would feel that he had someone along with him. That he wasn’t locked in that place by himself. I was right there with him. This way was great. In a way, we had our first kiss again. Sadness and hope filled in it. Maybe it was mechanical memory, maybe he knew who I was. I am not sure if Jitish recognized me, or remembered what a kiss meant. Nonetheless, it was a great day.
I pray – if you have found your person – that you may cherish your first kiss for the rest of your life. That you may never have anything diminish its worth, or taint it.
Jitish was on the ventilator when we moved to the LTAC. The only reason he couldn’t move to a rehab facility was because he didn’t breathe for himself. The therapists conducted rigorous breathing treatments on Jitish. Starting to check if Jitish could breathe well on his own. Slowly, very slowly, he started to do well without the ventilator. Two hours at a time, then four and then six. Finally, Jitish only needed a CPAP machine at night while he slept. On the 26th of June, Jitish was strong enough to have his tracheostomy capped. A speaking valve was placed to know if Jitish could and would speak. Or at the least make an attempt to produce some sound. Nothing. Either way, it was time to move onto the next stage of his recovery.
I urged the social workers to send referrals to two institutions – Sacred Heart Rehabilitation Institute and the Rehabilitation Institute of Chicago. Sacred Heart was only half an hour away from the LTAC. But was location the only parameter for judgement? I thought not. It was time to start visiting the two institutions to make a fair assessment and comparison of them.
I had my check list of questions ready for them to answer –
- Number of therapists on staff for each discipline – physical, speech and occupational
- Equipment and setup at the facility
- Ability to conduct CT scans, MRI and other big tests on-site
- Number of staff and nurses at the facility
- Hygiene of the room
- Number of patients admitted at the facility
- Therapist:Patient ratio
- General atmosphere at the facility – energetic, moody, morose?
- Patient discharge history
- Level of expertise in dealing with brain injury so severe
- Cost of admission
- Insurance coverage
- Proximity to other hospitals in case of an emergency
- Length of stay
- Rehabilitation program and structure
Sacred Heart was great. His room would overlook Lake Michigan. It looked like a shiny new facility. After speaking with the coordinator and the nursing staff, we felt that it was a fair place to be. There were a few therapists we saw in action. There were just a few patients admitted at the time, so that meant there were more than twenty beds available to fill. We made our way back to the LTAC, hoping everything was fine in the absence of the fathers and myself. Jitish had never been left alone without one of the fathers by his side. Everyone did well, Jitish and the mothers.
It was time to get through RIC.
My boss’s wife – Holly, would visit us often at the LTAC. To keep me grounded and focused on what to do next. I am so grateful to her for taking the time out to come speak with us. She was an angel to drive me out to my medical appointments back in Madison. She mentioned that RIC was among the best there was for brain injury rehabilitation and if there was anywhere Jitish would have a good shot at recovery, it would be at RIC. I set up a meeting with the coordinators at RIC but it was made clear that there were no beds for Jitish. RIC was booked up and we could only hope to get on the wait list. I researched a few medical publications and brain injury helplines to conclude that RIC was a good place for him considering their breath and depth of experience with rehabilitation. Some of the best Physiatrists worked at the RIC. We had to get a shot at being considered. If it was him, Jitish would move mountains to get me in there. I was going to do just the same. Only that getting into RIC was not as easy as sending a referral. We needed a strong case, recommendations and contacts. I had none.
I thought driving up there and making a human connection, showing Jitish’s pictures, records, would make an impact. Make a difference. I was clearly very worried of sitting behind the wheel and drive for such a long distance. My father came along as well. It was a bumpy and painful drive to Chicago. When we got there, we were graciously greeted by the Director of Operations who showed us around the facility. It was evident that RIC was miles ahead of Sacred Heart at the time, especially with respect to their experience with brain injury rehabilitation. I opened up to the gentleman in operations and pleaded to let us know if there is an opening for Jitish. Jitish has great spirit to overcome the toughest challenge, and this was the toughest yet. We drove back hoping and praying for Jitish to be accepted.
And then it was a long wait. He was accepted at Sacred Heart and I kept them as a backup if RIC fell through. Each day we would have the social worker call RIC to find out if there was a bed available. Sacred Heart was pushing for an acceptance, and we were pressing on for more time to make our decision. On the last day, 8th of July, a decision had to be made. If RIC hadn’t sent an acceptance by end of day, we had to go to Sacred Heart. Or we might lose both institutions and be left with none to pick from. I must have gotten on the nerves of the social worker at the LTAC, stopping by every hour on the hour. At about 3pm, by the grace of God, the social worker finally came by and announced that we were moving to RIC the next day. Oh the joy!
When you want something, really badly, find a way. Fight for it. Move mountains if you have to. Never give up.