Friday, October 12, 2012

All in Due Time

I am weak. Ready-to-cry-at-a-minute, afraid-of-the-future, not-able-to-contemplate-scary-outcomes-without-some-worst-case-scenario-planning weak.

At least I was this morning, and I was reminded of the intensity of this condition after visiting my doctor about a persistent yet irregular pain in my left calf. It has bothered me since Monday, the day after our family’s six-hour car ride to the Mississippi River and back. The doctor appointment seemed wise after failed attempts to massage the pain away, stretch the pain away, and deaden the pain away with Aleve. After discovering the left calf and its corresponding ankle measured .5 cm larger than the right one, the doctor employed medical best practices. She sent me immediately to the radiology department in a city 35 miles away for a Dopplar scan to rule out a DVT, deep vein thrombosis.

I was to drive directly there (“but don’t break any speed limits”) and then to wait for confirmation that the radiologist and my doctor had discussed the results. Should I have a blood clot in my leg, I might need to check into the hospital.

My results were negative, yet from 8:45 a.m. to 11:25 a.m. I wasn’t positive they would be, so I began making plans. The worst-case-scenario kind. Not actually the absolute worst, but the kind where someone could pick up Mark (because we only have one operating vehicle and I had it), bring me clothes and toiletries, inform our youngest why we can’t be at his senior year homecoming events, and help figure out how to care for Stross. I didn’t get that last one fleshed out satisfactorily. Too many details – medical supplies, cath schedule, ostomy care, accessible transportation (remember, I had our van), and ways to occupy his time.

I have had to formulate plans on the move in this manner before – many times before – but I have not had to do it when I’ve been the patient.

When I finally reached my sister by phone, I knew that connecting her with Mark – should the need arise – meant they could complete my planning without assistance. Still, my run-thru felt lacking.

Mark and I work best under pressure and when in proximity of one another. We had not been afforded that luxury. Plus, I was operating on less sleep than normal. One more thing: We no longer had adequate respite in place for Stross. Long story. The point of that story is this: Mark and I, once again, are the only living human beings who know “The Care and Feeding of Stross from A to Z.” Relatives are not even up to speed. Mark and I know it is important to not grow tired of this endless need to find and train members for our support team, but we have been doing it for more than two decades. After I-have-lost-count-of-how-many respite workers and caregivers; we have grown tired of it. We just have.

A friend has volunteered to learn – a genuine offer – but we have not made time for her orientation. She has a busy life. A family. A career. We will get to that someday. We promise.

Stross is more independent that he ever has been, even if not fully independent. He will never be fully independent.

Yes, we are still young and need to think of ourselves.

Yes, we know there are many good options.

Yes, we know what those options are.

Yes, we know others can take care of him, and he will be fine – even thrive.

Yes, we even know that one day it will not be us taking care of him at all, but such a time has not arrived.

We won’t wait for a worst-case-scenario, but we won’t needlessly rush when quality of life is at stake, either. Too many factors are in the air. Politicians using waiver programs in political warfare. Fluctuating finances. Uncertainty about plans that our parents, our siblings, and our other son are making about their respective futures.

As with today, negative results can mean a positive outcome.

That’s what happened this time. Thankfully.

At my doctor’s instruction, I am being more intentional tonight about rest-ice-elevation-Aleve, and more aware about a possible relationship to sciatica. The calf pain will resolve. I know my parental pain will resurface and need to be addressed as intentionally as the calf pain; it will likely present as a moment of weakness.

All in due time.

Tuesday, October 9, 2012

Missing the Point of Fire Point

As the days of this year have grown colder and filled with fewer hours of daylight, I have felt an undeniable pull to Northeast Iowa, particularly the limestone bluffs that shape the majesty of the Upper Mississippi River Valley. I wanted to stand, once again, on a overlook that never fails to make me feel connected to a greater sense of life and my smaller-than-minute place within it: Fire Point at Effigy Mounds National Monument.

Effigy Mounds is a protected burial site regarded as the sacred resting place of Native Americans who made this gorgeous land their home more than 1,000 years before the birth of Christ. These woodland people are known as Effigy Moundbuilders, as their culture seemed centered around the construction of burial mounds whose shapes and contents remain largely mysterious. I have been fascinated by these ancient land formations crafted by ancient people since my first visits to the mounds as a child. I visited on school field trips and with my parents and sister.

In 2007 I took Mark and our boys there; our hike marked the first time I was able to stand at Fire Point with them. My sense of triumph as a mother was born of accomplishment despite adversity. People with wheelchairs do not typically hike the paths at Effigy Mounds to enjoy the view from Fire Point. Instead, they take satisfaction in the scenery along a beautiful boardwalk built near the edge of the Yellow River Forest.

Yet I had wanted both my sons – the one who moves using his legs and the one who moves using his wheelchair – to see Fire Point, and because the National Park Service found a way to accommodate the provisions of the Americans with Disabilities Act while preserving the integrity of this sacred land, our family’s Fire Point hike had been possible. The park service had provided us with a gate opener that year, along with a detailed map to a maintenance road where we could park at the top of the bluff. From there, we easily joined a well-maintained part of the trail much closer to our destination. Mark and I had then alternated between pushing or pulling Stross in his wheelchair. We shoved through cedar chips and over twigs and patches of small rocks until we reached the vista of Fire Point.

I wanted, maybe even needed, that sense of familial accomplishment again. So much of life has felt overwhelming in recent months that I hoped to find spiritual renewal atop a bluff where I had sensed it before. Our family has often thrived despite unexpected adversity. The controlled adversity of a hike to Fire Point held the promise of renewed hope. I had wanted to get there so badly, that seeing a friend’s Facebook photo of a fall hike she had taken to a strikingly similar Mississippi bluff brought me to tears when I saw it last week. I simply could not let more fall weather disappear before taking my family back to Fire Point.

The weekends of our fall calendar have been full of high school events significant to our youngest son, now in his final year of high school. Of course I wanted to take him on the trip. I wanted to squeeze in yet one more fall memory for the four of us before he moves away and makes another city his second home, but he explained why that couldn’t be – at least not this fall. Maybe in the spring, he offered.

I needed to go this fall. I needed to refresh and renew during a time of decay. So this past Sunday, the remaining three of us awoke at sunrise with a plan to head to the river and then be back before sunset. The sky was a crisp, brilliant blue; the air temperature was unseasonably cool yet refreshing. The drive was absolutely beautiful with autumn colors painted on forested hillsides, through water-shaped coulees and across rolling fields in various stages of harvest. I was happy.

After stopping at various farmer’s markets and food stands along the way, we made it to Effigy Mounds. We did not make it to Fire Point.

Since our visit in 2007, the park service modified the visitation policy for persons with disabilities who wanted access to Fire Point. A ranger explained that it was now necessary to call ahead to request a personal escort. That ranger then would be required to accompany us on our hike. This new provision had become necessary after a group traveling with a recreational vehicle had used the access point but neglected to park their vehicle. Instead, they had driven on the hiking trail with their RV and had gotten stuck somewhere on the grounds of the sacred site.

Because we had not called ahead, no ranger was available.

Mark broke the news to me without awareness of its devastating impact. While he and Stross began exploring the visitor’s center, I remained near the entrance. I asked the ranger at the desk if what Mark had told me was true. He affirmed it, and repeated his offer to Mark to schedule a future date for our family; yet I needed that day.

Weary of life as I have recently known it, I wanted the empowerment of a redo. I needed Mark and me to conquer something challenging together. I needed our family to again prove that limitations were not always insurmountable, and I wanted to rest at a vantage point that native peoples had stood and looked across thousands of years before I breathed life.

I wanted to see the majestic Mississippi River from Fire Point; but that would not be. I soon became inconsolable.

Other people were returning from hikes while new groups began fresh climbs. No other wheelchair was in sight. Stross was chattering about Native Americans and making plans to tell his history professor about what he saw on our trip and asking me how much he could spend in the gift shop and telling Mark that his Boy Scout meeting time had been changed for that evening and wheeling in circles of excitement about the raptor demonstration taking place in the center’s auditorium and wondering aloud about the one set of small mounds just outside the center that he could get to and asking when we were going to head out on the boardwalk and if that walk could count as his exercise for the day.

It was all too much for me. It was all so identical to what my days are normally like. I had wanted something more. I had wanted something I was told I could not have that day, but I had planned for that day to be different.

Why had we gotten up so early and driven so far? Why had I been so happy moments earlier but near despondent now? Why did I have to be reminded that my life’s opportunities would forever be tied to my oldest son’s circumstances? Why was I still dealing with a brand of disappointment that was 21 years old on a day I had planned for personal renewal?

And why didn’t Mark automatically give my disappointment a voice? We used to communicate with one glance and instantly take residence in the same emotional space. Now I had to fight for words when I didn’t want to open my mouth. Speaking meant truth telling. Truth telling brought tears. Tears betrayed me to my son – and my husband.

Maybe what I had really wanted was to run away for just a bit. Mark offered that.

“I’ll stay here with Stross while you hike to Fire Point,” he said.

Sob. “No, I don’t want to be there without you.”

“Stross can wait in the car and be perfectly content watching a movie. We can probably be there and back in an hour,” he offered next.

“No!” I cried and then got angry. “I will not leave my son alone in a car. I can’t believe you even suggested it. No.”

Mark had known that wasn’t really an option. Stross cannot get out of our van independently, nor can he make wise decisions should a stranger knock on his van’s door. Mark just wanted to fix things and make them better.

“If you really want to get up there, I’ll try to help you push Stross up to Fire Point. The ranger said the first half-mile is the steepest.” Mark’s voice was reluctantly accommodating.

Now Stross was paying attention. “No!” he practically shouted and began to rally a mature pout. Then, embarrassed to potentially be the focus of attention on a tenuous trek, he proclaimed with great force, “I don’t want to go. You can’t make me.”

Stross is a 21-year-old man in a wheelchair yet in possession of a child’s mind. We can try to make him do things he does not want to, but we should not. I know that.

It was my turn to pout. I again said, “no.”

Mark was frustrated with my behavior more than Stross’. “Joy, it just won’t work today.”

We all waited for me to speak through tears.

“I know,” I said, then turned from them both. “Just leave me alone for a bit.”

Mark now had two children in his charge: one easily distracted and eager to continue the excitement of the day and one crushed by life’s relentless inequity.

I would like to report on some new epiphany birthed by this disappointment or hope that my grownup meltdown on Sunday held a redemptive power equivalent to my desired spiritual renewal. Nothing. I have nothing to report or proclaim.

There is this: I was still crying when I awoke Monday. My husband held me while I cried and offered to call Effigy Mounds to make reservations for a visit to Fire Point on Tuesday, or to find someone to serve as respite for Stross while he and I made the trek alone. It is supposed to rain on Tuesday. I don’t want to stand on Fire Point, crying in the rain.

More than that: I don’t want to be reduced to tears because I am unexpectedly reminded that life doesn’t always turn out as planned. I thought I had learned that lesson decades ago.

Is it spiritual renewal I am in search of or a life reset button? I have never wanted to hit reset before; I don’t really think that’s what it is now.

I have walked where ancient people once walked; I have yet to go where they dared to go, but I will get there in time.

What my life is remains a mystery. I can only hope for ample time during a brilliant autumn to enjoy beautiful scenery with the ones I love most. That happened on Sunday. What more should I want?

. . .

Thursday, October 4, 2012

The Independence Paradox

Walking past my neighbor's home today I stopped to say "hi," because I had not done it in a few days. Mrs. F, a new widow, is nearly 90 years of age with eyesight regarded as legally blind. She is still quite able, however, and extremely determined to prove how capable she is.

Mr. F enjoyed most of the spring with her, yet by summer he knew he wasn’t well. He kept his awareness from her as long as possible – until a couple of weeks before his death. He left about a month before summer turned to fall. Now, as days of daylight grow shorter, I wonder how much colder her life will seem when winter arrives.

I pushed the doorbell three times in rapid succession and rapped on the door in a unique rhythm. Mrs. F smiled broadly, as she usually does upon recognizing my friendly tap and physical form, and she wondered aloud where I had been.

"We have had some busy days," I said and then filled her in on activities Mark and I had enjoyed in support of our children and also events we had attended for work and pleasure.

"I had hoped nothing was wrong," she said.

"No, nothing wrong.” Then, recognizing how she had come to rely on my attentiveness, I offered an apology for not having stopped by sooner. “Is there anything you need from the grocery store? I plan to go later," I asked.

“Yes,” she said. She did need some things, but someone else was going to help with that. “She hasn’t called yet, though, so I don’t know.”

“Well, what if I call to check before I get ready to go to the store? That will give you time to check and even time to get a list ready,” I offered.

“That will be fine. I really only need a few things,” she said. “Thank you.”

I got a call within the hour. She had cancelled her other offer and wanted to know if mine was still open. “Certainly. I’ll pick you up at 4 p.m.”

“Oh, that will work great,” she said.

“I’ll see you then,” I assured.

At 4:02 p.m., her front door opened before my van had come to a stop. I got out to assist, but then waited. If she needed my help – closing the door, locking the door with her key, finding secure footing for each step – I would notice. I finally asked if she would appreciate help just to be certain.

“I’ll be fine,” she reassured. “I have this bar to grab that Mr. F put here for me.”

She grabbed that bar as if holding his hand. He had facilitated her independence then and now – at least for a while more.

The ride to the store was full of small talk about autumn: the leaves in her yard she was proud she had managed to rake earlier in the day, the foliage of trees in colors she can see, the children playing outside the local daycare who were enjoying one of the last warm days of the year.

The aisles of the store were comforting and familiar even if the placement of her desired products had become a mystery. She only needed to locate two items: bread and margarine. “I have become a big fan of toast,” she said. My list was three times as long, allowing for more time to be out, more time to recognize people’s voices, and more time to be seen. More time, also, to feel alive on one of the last warm days of the year.

Well-wishers added to a sense of well being.

“Why, hello.” “I was so sorry to learn about your husband.” “So good to see you out.” “How are you?”

Mrs. F smiled throughout. She kept her tears glistening inside her eyelids. She kept pushing her cart through open spaces, allowing me to take the lead as we moved through the store.

Returning home, she exited the van while I carried her two items to the door. I waited as she felt for the opening in the key lock and then made two unsuccessful attempts to insert her key. “Just a little higher,” I suggested. She opted to keep her left index finger on the opening while sliding her house key under that finger and into the slot with the aid of her right hand. “Success!” I exclaimed on her behalf, and then handed her purchases to her – all $3.19 worth.

After a bit more small talk, I opened the door to leave. She followed in order to lock the door behind me.

“Oh, wait,” she said. “Before you go, can you open this bottle of pills?”

“Certainly.” I obliged and opened.

“How did you do that? Will you show me?” Of course, I would.

“Feel these grips on either side of the cap? Just squeeze those and turn. Wah-la.”

Her face lighted. “My goodness. That was easy.”

“Why don’t you do it before I go just to be sure you don’t have questions.”

She easily opened it herself, and then, embarrassed, apologized for even asking. I reassured her that the demonstration had been my pleasure and she should not hesitate to ask for assistance again should the need arise. Then I left.

Mrs. F is doing well. She misses her husband of more than 60 years dearly, but she is doing well.

Independence. We aspire to it. We work to achieve it. We hang onto it in all ways possible.

I have learned the most valuable lessons about independence from my oldest son.

One tenet in particular: Independence is a paradox. It can only be achieved with the help of others.

Countries achieve independence when patriots fight – together.

Children exercise independence after learning skills from parents, friends and educators who have done their best work – together.

People remain independent through the help of others who support their goals and are willing to provide assistance as needed. The goals are accomplished together.

Independence comes through acceptance of our interdependence. It just does.