Dear Friends and family,
It has been 8 months since I
posted a blog. Many have written Leland
to ask in a round-about way if we are still alive. I have started many blogs, finished none. I intend to post this today….!
On December 21, 2013,
Geoffrey Musyoka and Gladys were married in Machakos. It was a beautiful Kambaa wedding with
processions (about 3), flower girls strewing rose petals and blowing bubbles,
one lady spraying artificial snow (December is summer in Kenya), all of which
we enjoyed tremendously. Gladys was
beautiful in her white dress; Geoffrey looked a bit nervous but very handsome
in his suit. Although the wedding was to
have begun at 10 am, the processions began about 1:15 pm and the vows were
exchanged around 3:15 pm. Leland and I
were the only wazungu there; several other staff from BKKH attended. Leland and I had to get back to Nairobi
before dark since we have decided to limit our travel on the roads to daylight
hours (dark comes about 6:30 pm in the summer), so we missed the reception (in
fact, left just after the exchange of vows—I think there were about 45 more
minutes to the ceremony).
I mention that day because,
by the latter part of December, I realized that my hearing was so poor that I
could no longer work safely and effectively in Kijabe. By October, I had stopped participating in
rounds—I could not hear what was discussed and found it very exasperating for
me and all the others to have everything repeated. I tried following the team and reading the
notes in the medical record to get the plan for the day—but as in the US, the
notes often did not reflect the extent of the discussion. On the drive to Machakos, Leland suggested
that I reconsider having a cochlear implant—by the drive home from the wedding,
I had decided to do just that.
Because of the new health
care requirements, I was able to enroll in an insurance plan that covered
pre-existing conditions—including my hearing loss. Before the ACA, I could not get coverage for
an implant—at least not until I qualified for Medicare. I was able to make appointments with two
implanting surgeons and acquire a PCP via the internet while still in
Kenya. I left Kijabe on January 9, had
my left cochlear implant on February 13, and had my first programming session
on February 24. After my implant was
“activated,” the audiologist went behind me and said three colors. She asked me to tell her what I heard—I
replied, “Orange, yellow, purple.” We
all burst into tears—even the surgeon had tears in his eyes.
It is truly life-changing to
be able to hear again. At first, sound
was very electronic; people sounded like Munchkins in the Wizard of Oz. I heard noises that I could not identify—one
day I heard a strange sound all day; then that evening realized that what I had
heard was two plastic bags flapping against each other in the breeze through
the window. After 5 months and several
programming sessions, I can hear and understand almost all speech, even at very
low volumes. I hear birds chirp, rain
patter, water splash, doorbells and phones ring. For several months, I practiced daily
listening exercises on-line—after Leland came home on April 30, I have simply
engaged in daily conversation. He still
is amazed at how much I can hear and understand. My kids joke that they can no longer talk
about me when I am present. My daughter
says the biggest change is that I now can stay up late and talk—before the
implant I would be exhausted by 8 pm. My
son-in-law thinks it is fantastic that I can now talk with him in the car. For the first time in 5 years, I can engage
in conversation with my 5-year-old granddaughter. It is truly an amazing, almost miraculous
experience. Every day, I realize what a
gift I have been given.
 |
| Evelyn and Alex reading together |
Leland came home to be with
me for the implant, then returned to Kijabe.
Although he had many visiting neurosurgeons to help since his partner
left in September for a 6-month fellowship in Germany, Leland was the only BKKH
consultant who was continuously there until early April. During that time, he became exhausted and had
several episodes of illness. So, it
didn’t take too much encouragement from me for him to agree to come to the
States for a 4-month break from May through August.
In the weeks after Leland’s
arrival in the Chicago area, he had increasing exhaustion and proximal muscle
weakness (upper arms and upper legs). He
was evaluated in Madison and was found to have chronic fatigue syndrome as a
result of an Epstein Barr viral infection he had in Kijabe in March. Over the past 3 months, he has had a few
weeks when it seemed that he was slowly improving but over the past week, his
muscle weakness has again worsened. We
really don’t know if he will be strong enough to return to Kijabe. For that reason, we have deferred our departure
to Kenya until late October.
We have tremendously enjoyed
being back in the USA. We continue to
marvel at the roads, the signage, the running water (hot and cold, and without sediment).
I found an apartment in La Grange Park and moved in there on February
1—within walking distance to my son’s house, restaurants, the bike shop, a drug
store, a hardware store—and most importantly, 0.7 miles from Grace Lutheran
Church and 0.1 miles from the grocery store.
For the first 2-3 years in
Kijabe, I felt comfortable and happy about not having a home in the US—I would
joke about being homeless and unemployed.
After 3 years though, I missed having a place to call home—our furniture
and clothes that we had not given away or sold were in storage, we had no
address that was ours. So when Leland
became ill, we thought seriously about where to settle in the US if we couldn’t
go back to Kijabe. Since both of us like
the walkable communities here in La Grange/La Grange Park and love being near
to Michael and Marisa, we started to look at houses and neighborhoods. On May 30, we saw the house where we want to
“age-in-place.” We closed on our
bungalow on July 15, moved in on July 18, and will start the renovations that
will allow us to live completely on the first floor in mid-late August. Both of us have a real sense of peace about
this decision and are very grateful to have this house as our own.
 |
| Our little house |
We spoke of our work in
Kijabe in Charlotte NC at a BKKH board meeting and twice at our church here in
La Grange. Leland was a keynote speaker at the Bethune Conference in Hamilton,
ON in June and a visiting professor in Charleston SC in August. I continue to work on the BKKH database;
Leland has made revisions to several papers and submitted them for
publication. He continues to work hard
to recruit visiting neurosurgeons to go to Kijabe for 2-week commitments to
help his partner, Humphrey Okechi. We
hope that we both will return in late October—but if Leland is not able to do
so, I will return for 2-3 months in order to train someone to take my place
there, and to pack up and say goodbye to the many people who are our community
in Kenya.
The summer months are usually
lean ones for NGO’s. This summer is no
different. There is consideration of
limiting admissions at BKKH; this will require hard decisions not only by BKKH
administration but also by all the Kenyan staff. For that reason, I ask for your prayers for
wisdom and guidance, your donations to provide for care of the children, and
your efforts to tell others about the work that God is doing through BKKH in
Africa.
I’d like to close with some
thoughts on poverty and poor people.
Most of us here in the US have little appreciation for how deeply
poverty impacts every facet of life for many people in the world. Herman Melville said, “Of all the preposterous assumptions
of humanity over humanity, nothing exceeds most of the criticisms made on the
habits of the poor by the well-housed, well-warmed, and well-fed.” Leland’s
sister Mary said, “I just watched and listened to your talk at the Bethune
round table conference. Wow. What an eye opener. I am afraid you ‘hit the nail
on the head’ about most PNS's [pediatric neurosurgeons] not being committed to
treating the poorest of the poor because they are or will be disabled.
The big question to most of the PNS's re treating the African kids is, ‘why
bother’? That makes them uncomfortable and squirm in their chairs. Answer
being, ‘I'm comfortable where I am, and to commit to that would take me out of
my comfort zone, salary income, etc, etc.’ Unfortunately, it takes a Christian
commitment that is missing in most of them. Why would anyone want to work in
such conditions as no funding, used/broken equipment, strained living
conditions, and lack of support? That's because they are looking at the big
picture. You have to look at, and really see, the soul of the little person
inside that disabled body. Then, how can you say no?”
Take care,
God bless.
Susan
Links:
fhs.mcmaster.ca/surgery/isd/brt2014.html (Bethune
Conference, Leland’s presentation)
